Augmentation or something else

[Eternityroad]

I had been handling RLS successfully with only hydrocodone for several years and after getting off the several regimens of DA’s out there. Then I discovered Kratom and in 2017 I weaned myself off of the hydrocodone and was doing quite well with the Kratom, even though it was a bit more expensive. Still worth it because no more constipation. Then last year I noticed an increase in symptoms. I thought at first it may have been a low quality crop of Kratom but experimentation told me that was not the case. I asked my Doctor to put me back on the Hydrocodone but I had to forego the Zolpidem which I had been using for insomnia. The Feds won’t allow two class I meds to the same person. Fine. I thought hydro was more important.

I soon discovered that the usual doses I had been using before Kratom were not sufficient. Used to be 3 tabs of 7.50-325 spread throughout the day would suffice. Now I was lucky to get two or three hours of relief out of two tabs of Hydro! So I started using Kratom overnight and in mid afternoon. I would only use the Hydro for late afternoon and evening. Soon I found I was having to increase my dosage of Kratom by twice as much. Example: usually ½ t. of Kratom was good enough to get me from late morning to late afternoon. Now I need to take a teaspoon at noon and a teaspoon at 2pm. Overnight is a *****. 2-½ t. of Kratom right before bed used to suffice until about 3:00 am when I would wake up to take 1 tsp. to get me through the rest of the way. Now I have to take two tsp. every two hours. I go to bed at 11 and wake up squirming at 1. I take two tsp. and then apply hot compresses to relieve my symptoms until the Kratom kicks in which takes about a half hour. Finally I get to sleep and am awake two hours later to repeat the same routine. I can’t get more than two hours of uninterrupted sleep. So I upped the dose to two and a half tsp Kratom. If I am lucky I can get an extra half hour to an hour.

To make matters worse the same regimen doesn’t work every night. Some nights I get up and the dose doesn’t kick in for some reason. If after a half hour it doesn’t kick in I take another teaspoon. Meantime I sit in the bathtub applying hot compresses to relieve symptoms. The other night it took three extra doses a half hour apart to relieve my symptoms so I could actually go back to sleep

I have also noticed that the skin on my legs gets very sensitive. The cuffs of my shorts or jeans or bed clothes cause irritation or subtle tickling when symptoms start kicking in. Sometimes I have to use extra doses in the afternoon and sometimes the dose of hydrocodone doesn’t even suffice. These failures are spotty and whenever I go somewhere I have to take extra meds in case the doses don’t kick in or bring proper relief.

I am concerned that I will have to keep on upping doses as time goes on. It feels like I have to always have hydro or kratom in my system to manage my symptoms. It is very frustrating and I want to scream or throw things, especially when the standard doses aren’t working. Hot showers or hot compresses are comforting but do not bring lasting relief unless I have taken Kratom or hydrocodone in the meantime.

My days are usually ruined. I need to nap several times in the afternoon, but need to be sure I have enough Kratom in my system so I don’t wake up squirming. In mid-evenings I can hardly hold my eyes open to watch a TV program or read. And I don’t look forward to going to bed because I know I am going to be up and down all night making certain I have enough kratom in my system.

I am lucky to be retired but it is no fun to live a life centered around catering to relieving the symptoms of RLS. I am lucky to have an understanding partner. But I have to wonder what I do when I get to the upper limit of the amount of Kratom I can consume without doing myself damage. And can I enjoy a social evening when I am sleepy. This is nutso!

BTW I do have low iron numbers but iron infusion treatments are too expensive for my budget. I have for the the last five months been taking iron tabs with vitamin C in the morning. Even if I could afford iron treatments it isn't always 100%.

[ViewsAskew]

So frustrating, isn't it? I wish I had some solutions for you.

Are you in the US - I seem to recall you were. Are you on Medicare -if so, does it not cover infusions?

I do believe that some of us really do have issues with tolerance and I do believe that taking the hellish step of taking an extended holiday (at least a month) of reducing or stopping opioid or opioid-like substances is really important. I am in that horrid place as I type. Fortunately for me, I can use pramipexole at that time. Since I don't use kratom regularly, I can use it when I reduce the methadone so that I don't have as many physical withdrawal symptoms.

[Eternityroad]

Thank you for your response. I am in the USA and I do have Medicare. My understanding from reading other posts is that iron infusion is not covered by Medicare, but I will check more closely.

Don't know about going cold turkey. There is nothing I could do but rely on the hydrocodone while I was off the kratom. But I don't have enough tablets per prescription to cover it all. Five years ago I would have. I would need at least three times the amount I take now and I doubt my doctor or the health plan would approve. Right now I use my daily three tabs to get me through the evening until bedtime. I don't know about going back on pramipexole and then trying to get off it again. It is just a big headache. I could try a different strain of kratom or just keep upping my dosage and hope can keep on affording it.

[ViewsAskew]

Thank you for your response. I am in the USA and I do have Medicare. My understanding from reading other posts is that iron infusion is not covered by Medicare, but I will check more closely.

Don't know about going cold turkey. There is nothing I could do but rely on the hydrocodone while I was off the kratom. But I don't have enough tablets per prescription to cover it all. Five years ago I would have. I would need at least three times the amount I take now and I doubt my doctor or the health plan would approve. Right now I use my daily three tabs to get me through the evening until bedtime. I don't know about going back on pramipexole and then trying to get off it again. It is just a big headache. I could try a different strain of kratom or just keep upping my dosage and hope can keep on affording it.

I said I'd never take pramipexole again after augmenting in about a week. But, now that my iron is much higher, I can take it for extended periods. I have no difficulty stopping it (now). If you took longer than a month to augment, you could reduce both the hydrocodone and the kratom slowly over one month while you increased the pramipexole. Not saying it would be fun - it never is for me. But it does help me in the long term.

[Eternityroad]

How much pramipexole do I take as I experiment? Last December my doctor ordered me a prescription of .5 mg after my telling him about my RLS. He didn't even tell me he was prescribing it. The pharmacy called me one day and there it was! I think he just looked up the protocols on the computer and went from there after I left the office. So before I began to take it I came on this board to find out about it. (I had been on Ropinerole years ago) I found out that the suggested dosage on the bottle is way too big. That I would have to split the pills into eighth's. Which I did, to no effect. I increased to a quarter of a tab but to no effect. Much of what I read about pramipexole and augmenting and trying to get off of it after years was so negative that I decided to stick with the kratom. Then in February I managed to get the hydrocodone. Since Feb. I have also been taking iron tab with Vitamin C daily. I would like to give what you are speaking of a whirl. Thanks for filling me in.

[ViewsAskew]

How much pramipexole do I take as I experiment? Last December my doctor ordered me a prescription of .5 mg after my telling him about my RLS. He didn't even tell me he was prescribing it. The pharmacy called me one day and there it was! I think he just looked up the protocols on the computer and went from there after I left the office. So before I began to take it I came on this board to find out about it. (I had been on Ropinerole years ago) I found out that the suggested dosage on the bottle is way too big. That I would have to split the pills into eighth's. Which I did, to no effect. I increased to a quarter of a tab but to no effect. Much of what I read about pramipexole and augmenting and trying to get off of it after years was so negative that I decided to stick with the kratom. Then in February I managed to get the hydrocodone. Since Feb. I have also been taking iron tab with Vitamin C daily. I would like to give what you are speaking of a whirl. Thanks for filling me in.

Most of the docs these days say to take no more than .25 a day. I started at 1/4 of that.

I have a theory that whichever DA you started on is the one that you need to continue. Ropinerole NEVER worked for me - but a tiny amount of pramipexole always does.

How much ropinerole did you take before? Did it work?

[Eternityroad]

How much ropinerole did you take before? Did it work?

I don't even recall. The ropinirole was 8 or 10 years ago. It worked for awhile, maybe two weeks, and then I went back on the hydrocodone which worked well for me until I weaned myself off of it in favor of Kratom.

[badnights]

I have a theory that whichever DA you started on is the one that you need to continue.

That doesn't seem to be true for me. I started on ropinirole, augmented within days, stayed on it a couple of months while I was educating myself and my doctor, was switched to pramipexole, augmenation of course continued, and eventually I got off the pram. and ended the augmentation.

Since then, I have occasionally taken some pramipexole; not for years now, but in the first few years post-augmentation. It was effective. I never took ropinirole again; I have such an aversion to it.

[ViewsAskew]

I have a theory that whichever DA you started on is the one that you need to continue.

That doesn't seem to be true for me. I started on ropinirole, augmented within days, stayed on it a couple of months while I was educating myself and my doctor, was switched to pramipexole, augmenation of course continued, and eventually I got off the pram. and ended the augmentation.

Since then, I have occasionally taken some pramipexole; not for years now, but in the first few years post-augmentation. It was effective. I never took ropinirole again; I have such an aversion to it.

That's the way of theories - enough evidence and they are disproven, lol.

[Dr.Placebo]

EternityRoad, I am interested in your story about kratom. I took kratom for about a year and a half and it was a godsend for me when I couldn't get anything else to treat my RLS after I augmented (I think) on DAs. but recently I became of the opinion that the kratom was causing augmentation too (very sad!). specifically, I was having to escalated my kratom dose (as you were) to get relief of symptoms and sometimes taking extra doses during the night, while noticing I was having worsening involuntary jerking movements of my torso and arms. these upper body spasms were the same symptoms that developed when I took DAs, and they subsided and became much less severe when I stopped using kratom (and previously when I stopped taking DAs). I wonder if you are experiencing augmentation from kratom?

[Eternityroad]

Dr. Placebo,
I am Ken who you replied to in another post. For many years I had been controlling my RLS with hydrocodone. Then I read about Kratom on this site in 2017. I purchased some locally from a smokeshop and gave it a try. Then I went on line and found places to get good deals. I weaned myself off of Hydrocodone even though it was less expensive to purchase than the Kratom. I didn't like taking so much of the opioid. And the Kratom is natural. Worked quite well until last year when I had to up the amount I was taking. I thought it may be the type of Kratom. I had been taking Red Vein exclusively for four years. So I branched out and tried some green and white varieties. I also had the doctor put me back on hydrocodone so I could alternate and give the Kratom a rest. I used the hydro in the afternoons. I still have had to increase my dose of Kratom. I began taking 8 to 10 tsp/day. Now I am up to 12 and if it is really bad night 14 or 15. But those are few and far between. I honestly believe that my symptoms are worsening and not augmenting. I hadn't been on a dopamine agonist. I don't know for certain if opioid use causes augmentation. But I used it for nine years without worsening of symptoms.

My symptoms are confined to my legs. No involutary movements but I move them restlessly as the symptoms set in before I can get out of bed or my chair. It feels like my legs are suffocating and I need to move as a matter of life and death. I noticed the skin on my legs becomes very sensitive. If I am wearing shorts it is very sensitive when the edge of my shorts touches the back of my leg. That is one way I know the RLS is beginning. I usually dose up with Kratom right away, but it still takes a half hour for relief to kick in. In the meantime soaking my knees with hot moist towels for five minutes alleviates the symptoms and I can go back to bed immediately symptom free. Lately I found a new relief. Instead of pacing I do short little runs up and down the hall. Very fast for a few feet then stop and repeat. I do that for about five minutes and it kills the RLS right away. Pacing never did much for me. Neither did rocking back and forth on my feet during a TV program.

Hope this helps.