Feeling deppressed

[Memmy]

I've been on pregabalin for a few months now after stopping mirapexin. I've gained weight and I just and don't feel myself. I'm 73 this year and I feel tired and a bit unstable on my feet. I sleep deeply but wake up several times a night and walk around etc. To sleep all night I have to take tramadol. I wish I was back on mirapexin although I augmented. I was only on 0.09mgs. At least I didn't have to take so many pills. I'm now on 400mgs preg. I don't want to take any more as I will be even dizzier as I was when I took 450mgs. I know you will all say don't go back on mirapexin but at least I felt good. I was on it for many years.

[SueJohnson]

Did you have the same problems when you were on gabapentin? You might want to try Horizant. What about Dipyridamole? And yes, don't go back on mirapex. Since you augmented you will do so again probably pretty quickly.

[Memmy in reply to SueJohnson]

Yes I took gabapentin and kept increasing and they told me to change to pregabalin. Isn't Horizant the same thing? Dipyridamole gave me the most terrible headache. I think I would prefer just taking tramadol

[SueJohnson in reply to SueJohnson]

Horizant is basically the same thing but many people who have side effects from gabapentin or pregabalin don't have them on Horizant. It is worth a try. Depending on where you live, it can be expensive, although Horizant has a prescription savings card which if you qualify for makes it inexpensive. I don't know all of the qualifications. horizant.com/savings

[Memmy in reply to SueJohnson]

Thanks I'll speak to my neurologist

[Hope61 in reply to SueJohnson]

HiWhat are the side effects of Gabapentin?

[SueJohnson in reply to Hope61]

Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. I have a very slight tremor in my hand when I wake up that goes away after an hour or so. I also have a very slight balance problem that also goes away after an hour or so. I feel more tired during the day but it doesn't really bother me. I gained a couple of pounds.

[Memmy in reply to SueJohnson]

Thanks for the advice. The problem is is that it just doesn't seem to work so I'm slowly reducing the dose

[Nikos64 in reply to SueJohnson]

I’m glad you mentioned the tremor in your hands. I’ve been on gabapentin and Horizant and noticed the same thing. I shrugged it off as getting old. Thanks !

[Memmy in reply to Hope61]

Sleepiness, being unbalanced, putting on weight. However others swear by it

[Joolsg]

Hi Memmy,Pregabalin and gabapentin often do not work for some who have experienced augmentation on Dopamine Agonists.

Dr. Buchfuhrer believes this is because the D1 receptors are permanently damaged. It's just a theory but Pregabalin and gabapentin didn't work for my RLS at all.

I know you're in Greece and doctors are reluctant to prescribe opioids, but it seems that they are now the best option for you.

Can you print out the Mayo Algorithm and the Massachussetts Opioid study a d show to your neurologist? They may be prepared to read the latest up to date information.

If tramadol is the only thing that helps, it shows that you will respond well to low dose opioids.

I hope your neurologist accepts that Pregabalin isn't working for you and the side effects are unbearable for you.

Don't go back on Dopaminergic meds as you will augment quickly.

[Memmy in reply to Joolsg]

Thanks for replying. I just feel so upset that pregabalin isn't working. Sue Johnson suggests trying Horizant but I think it's more or less the same as preg and gaba. I'm going to drop down my dosage and see if I have the same results as with the higher dose, using tram of course or Kratom although it's not as good. Hope your meds are still working and Happy Easter

[ziggypiggy]

Once you become a risk for having a fall doctors tend to get really conservative on any med that may contribute to one. Don't want to add to the problem by breaking a hip or something else because of a fall. I'm rooting for you to get some relief.

[Nikos64]

I’ve been on pregabalin and I thought it was a terrible medication for RLS. I’ve also been on pramipexole which was also terrible and caused me to augment. The best treatment for me has been Tramadol but my doctor is very reluctant to prescribe it.

But my advice to you is to get off pregabalin and stick with Tramadol. I think pregabalin is probably harmful for your health and the benefit is minimal.

Best wishes !! Stay upbeat if you can and get out and do some walking during the day.

[Memmy in reply to Nikos64]

Thank you. I agree completely. I'm slowly reducing pregabalin. It makes me so sleepy and dopey. I also have difficulty getting tramadol from the doc

[LotteM]

Memmy, I am so sorry to read this. The combi pregabalin/tramadol seems to work fairly well for your rls, but I can relate to your feelings of not being yourself. I was only for a few months in pregabalin (other u tolerable side effects) and tried before that gabapentin for about a year. I didn't work and already at a low dose I suffered from depression-like symptoms. The most upsetting ones were that I was regularly shouting that I would be better off dead, that I would like to ride into a tree and a canal. It disappeared when I stopped the gabapentin.

Make a brief bulleted list for your doctor of the various (types of)meds that you have tried and why they failed (insufficient effect or unbearable side effects or both. Look at the Mayo Clinic paper and decide for yourself what you want in terms of treatments. If you can, identify first, second and third options. Do discuss experiences with your doctor to get her/him on board that you need a different approach. And discuss the RLS algorithm and your preference. I hope that will work. Focus on your quality of life. This approach helps me.

[Memmy in reply to LotteM]

Thanks LotteM. I've never been depressed before and can't be bothered with anything. It must be the pregabalin. I'm slowly bringing the dose down as it doesn't seem to do much except make me sleep

[LotteM in reply to Memmy]

Seems wise,Memmy, to reduce and go slow. Please fight (with words of course) for a more effective treatment. I find it helps to bring a close and trusted person to the appointments with the doctor. You'll have to make her/him take you seriously even if s/he doesn't know the answer. You want to discuss carious options and their different pros and cons.

[ziggypiggy in reply to LotteM]

Double agree!!! Bringing someone with you to attest to your terrible symptoms and reduced quality of life is so useful. I know I get worked up when an appointment is coming and often it doesn't play out the way I want because I feel intimidated or just want to get it over with. Having someone else help keep the conversation going in the direction you want really helps. Also, if you want to suggest trying an opiod or increasing a current opiod dosage the person with you can confirm that you are responsible with medications and represent a low risk for abuse.

[Bganim1947]

I started a regimen of Pregabalin 300 mgs 3x/day and Tramadol the same dosage and times 5 years ago after augmenting on Ropinerol. I was 70 then and at the end of titrating off Ropinerol. It was one of the worse experiences I ever had. I actually went through 4 weeks of withdrawal.

I understand your desire to go back on Mirapexin to feel normal again, but I hope you can stay the course, because the augmentation will only get worse.

I felt exactly like you at first, I gained 10 pounds, I didn’t sleep well at all (you are fortunate you can sleep through the night); I fell asleep from the combination of the 2 meds at the drop of a hat at first—once while driving, other times while talking with friends, or going out to dinner. But I normalized within a month or two. You have to give your body time to readjust. And yes, I often felt depressed. But what I didn’t feel was RESTLESS LEGS!

This combination of medications calmed it down to almost nothing, unless I over did using my legs walking, gardening, etc.

One last thing I will say to you is that I was fortunate enough to find an Doctor who was an RLS specialist, who had RLS herself. She put me on this cocktail as she called it for my RLS and it has been wonderful ever since. I’ve never had to increase my dosages of either meds in 5 years. Plus I lost that 10 pounds in about 6 months. The most important thing she said to me though is not to go to the highest dosages of either medication and that is 400 mgs. For both Tramadol and Pregabalin. You are on a very high dose of Pregabalin. If you take it all at once or in two doses, even if you spread it out, say morning and night, that could account for your feeling wobbly and unlike yourself. As I said my doc put me on 100 mgs of each spaced out at 8AM, 3PM and 10PM—that’s 300 mgs total for each. The other most important thing I discovered is I must never miss a dose or my RLS will come right back. So, I set a timer and make sure I don’t stray from my appointed time more that half an hour. These are the things I’ve learned. My doctor assured me that this med combo is the gold standard now for treatment of RLS. Doctors who are still prescribing dopamine agonists like Mirapexin and Ropinerol are out of touch with present day research on RLS.

Best wishes, Bganim

[Memmy in reply to Bganim1947]

Thank you so much