Help - kindling?

[Mikatrap]

As described in my other posts, my dopamine agonist withdrawal is awful. I suffer from DAWS, and I've done several stays in an hospital neurology service, and they are doing their best to help me, but something is awfully wrong. I got out of the hospital the day after yesterday. Yesterday, I had a terrible withdrawal crisis. I had electricity and pain waves in my whole body, I could not breath, I was shaking like crazy. I had to call an ambulance, and now I'm back at the hospital. Since then, I had two more crises here. I suspect that the constant worsening of my condition has to do with the phenomenon of "kindling" that is well document for benzos.

At the origin, I suffered from mild RLS. in 2021, they put me on pramipexole. I suffered from severe augmentation. I tried to withdraw from pramipexole from Aug 2023. And since then, my life is hell.

Regarding medications, here is my story:

* DAs: I went from pramipexole 0.26mg to 0.13mg in mid-August 2023, then 0.26mg in early Sep, then 0.18mg in early Oct, then 0.26mg one week later, then 0mg (cold-turkey stop) during two weeks at the end of Oct, then 2mg Neupro in mid Nov, then 1.65mg in mid-Dec, then 1.8mg in end Dec, then 1.6mg mid-Jan, 1.4mg mid-Feb, in 1.2mg mid-March, then I tried to go down to 1mg yesterday and I ended up back at the hospital.

* Benzos: During my first week at the hospital in Oct, they gave me high doses of clonazepam and alprazolam to stabilize my withdrawal symptoms. During my second stay, they gave me back both molecules. I went out with clonazepam 0.5mg and alprazolam 3x0.25mg per day. Since then, I slowly reduced my alprazolam daily dose by 0.125mg to reach 0 two weeks ago. Now, they are giving me back alprazolam given my condition.

* Pregabaline: I take 300mg of pregabalin pear day since Nov. In jan, I tried to taper it off, removing 75mg per week. I suffered from an increase of my pain crises when I reached 0mg, and reintroduced my 300mg dose.

* Opioids: I take Tramadol 100mg extended release once per day since Nov, plus one or two 50mg fast action doses in case of pain crises. My neurologist tried to replace it with Buprenorphine last week, and I had a reaction to the molecule (awful sleep paralyses), so now I'm back on Tramadol 2x100mg ER + 50mg fast action doses. He is thinking about putting me methadone.

My current condition is the following: I shake nearly all day long, I have nausea, awful quasi-epileptic and pain crises, high anxiety, and I am depressed. I think a lot about taking my life. My feeling is that I've been tortured for months, every day, and I'm at the limit of what I can endure.

I had all possible medical examinations and I'm in excellent health, except my awful withdrawal symptoms.

Any advice-help would be welcome. Does DA withdrawal kindling exist? Could I suffer from kindling from DAs? Or from benzos? What else could it be? What's so wrong with me? Did they do a permanent damage to my brain by stopping my DA cold-turkey in Oct? Could I get out of this hell one day? Could I fully recover?

[SueJohnson]

It does sound like kindling but DAWS is not likely to cause it. It's definitely from the bezos. What are the doctors doing about your current symptoms of shaking all day, nausea, awful quasi-epileptic and pain crises, high anxiety, and depression? They need to get these symptoms under control. I don't know why they ever gave you both clonazepam and alprazolam.

At this point you need to get your symptoms under control and not try to reduce anything. You probably want to increase your pramipexole a bit to stop the DAWS. After that happens wait a week or two to be sure everything is back to normal.

Then start by reducing the pregabalin by 25 mg not 75 mg every 2 weeks not every 1 week.

Then get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram so you can start with one of the benzos and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Wait for any symptoms to settle before going to the next reduction. Don't be in a hurry as it is going to take a long while.

Only after you are off pregabalin and the benzos tackle your DA. As I mentioned before switch to ropinirole. Multiply your neupro dose by 1.5 to get the ropinirole dose. Be sure they don't give you the ER or XL version.

Yes methadone sounds like a good idea.

[Mikatrap in reply to SueJohnson]

Hi Sue,

Since my last post, my condition improved, I could get back a normal life for 2 weeks, and then my CNS crashed again when I decreased my Neupro dose. I'm back at the hospital in a pretty bad shape, and they introduced another drug into my medication: Wellbutrin, an antidepressant (noradrenaline-dopamine reuptake inhibitor) aiming to stabilize my mood. I was reluctant to accept, but I felt so bad that I did it. Since I started taking it a week ago, my condition has even worsened (strong nausea, pain crises during the night, insomnia, hot flashes, tinnitus, higher anxiety, and my RLS is coming back after 6 months of silence).

My. current drug cocktail is:

- Wellbutrin 150mg

- Tramadol 300mg, up to 400mg in case of pain crisis. I seem to need more and more Tramadol...

- Pregabalin 300mg

- Clonazepan 0.5mg, sometimes 1mg in case of pain crisis

- Rotigotine 1mg

I'm more and more convinced that my current condition originates from this awful drug cocktail.

Would you still suggest me to switch tramadol for methadone, stabilize (which seems really hard for my CNS), taper off pregabalin, taper off clonazepan, swicth from rotigotine to ropinirole, then micro-taper ropinirole?

Should I keep Wellbutrin?

Methadone seems to come with serious side effects. Is it really required if my ropinirole tapering is going to be very slow? Does it take ages to withdraw from it?

Sorry for all the questions.

Thanks

[SueJohnson in reply to Mikatrap]

I would stop the Wellbutrin. You may need to taper off it. Ask your doctor. Stop trying to reduce the neupro for now. You are on a high dose of tramadol. 100 to 200 mg is the normal dose. Methadone is stronger than tramadol however it does have more side effects and switching you would also be on a high dose at roughly 10 to 12 mg. I am concerned about your high dose. I wouldn't take more than 300 mg of tramadol. I am inclined to say stay on the tramadol but I would discuss this with your doctor.

You need to be reducing your clonazepam.

[LotteM in reply to Mikatrap]

I second Sue. And I want to add a question. How did you reduce the Neupro? Given your fierce reaction, it may have been by too much a step. Do you know that you can cut off small bits of the patch? The patch has a surface-related dose, so a small bit cut away is a small reduction. And what dose of Neupro are you still on? 1,2,3 or 4 mg? If higher doses than 1mg, ask for a switch to 1 mg patch so you can reduce by very small steps and more precisely so.

[Mikatrap in reply to LotteM]

I only cut 5% of the patch, i.e. 0.1mg. I'm now at 1mg. Yes, my doctor is about to prescribe me 1mg patches to be able to reduce by smaller steps. Once I will resume reducing it, I intend to do it by steps of 5% of 1mg = 0.05mg, once or twice per month, depending on the severity of the WD symptoms.

[LotteM in reply to Mikatrap]

I really hope that will result in far less fierce symptoms.

[Joolsg]

I agree with SueJohnson. Instead of giving you benzos to settle withdrawals, they should have given low dose opioids.But, first follow SueJohnson advice. Go back on the dopamine agonist and slowly reduce the benzos and then slowly reduce dopamine agonists.

Tramadol is not a good choice to cover severe DA withdrawals, as it's the only opioid that also causes augmentation.

When you are off all benzos safely, then slowly reduce the dopamine agonist, with the help of methadone.

[Mongolia2020]

I have been through a bit of this, but not as bad as you. Eventually I requested methadone and my dr agreed.

But I had to be patient and start slowly so my body got used to it. I started on 2.5 mg then after 2 weeks 5 mg. That was too much and I reduced back to 2.5, then 3.45, then 5 mg over a month. Then 6.25 mg. I am now getting about 5 1/2 hrs sleep a night, very broken. I get up twice in the night and do 1,000 steps walking round and round the house, or 30 squats, then I do paint by numbers for about 1/2 hour, then go back to bed. I will soon go up one last step to 7.5 mg methadone and I anticipate 6-7 hours less broken sleep. I feel so much better and I think this is the answer for me.

Hope this helps you. Good luck!

[tagaxel]

Wow! The medical community has sure given you quite a beating. Yes, it seems clear that your central nervous system has been kindled. Once that happens you’re going to become dependent on any kind of a drug that affects the CNS whether it is a benzodiazepine or a dopamine agonist. The only way to get off those drugs is through what is called micro tapering. I am micro tapering right now from pramipexole.

I can tell from the dosages that you have indicated that you must be somewhere other than the United States. Here the lowest dose available for pramipexole 0.125 mg. Nevertheless, you would use the same approach with your medication. What you have to do is take the pramipexole tablets to a compounding pharmacist. I’m assuming that they exist wherever you live. In the United States they are different from the regular pharmacist. So, you take your pramipexole tablet to a compounding pharmacist who then renders the solid pill into a liquid form. You will need an extra script for the compounding pharmacist. Usually, the compounding pharmacist does not fill the prescription itself for pramipexole but takes what you give them and then turns it into a liquid. You can then reduce by eliminating micro milliliters per day.

The idea of the micro taper (which can also be used for benzos if you end up stuck on those as well) is to trick the central nervous system into not noticing the loss.

Right now, because of the extreme discomfort you are feeling, your first step is to stabilize. But I see that you are also taking another dopamine agonist Neupro and that certainly complicates the matter. I’m not sure if you are still taking the benzodiazepines. That’s going to complicate matters. I might be able to help you out if you want to carry on a conversation outside the group through email.

And of course, further complicating the issue, they have you on opioids. At some point you should think about suing the bastards who have misprescribed all these drugs! If you’d like to talk to me off-line my email address is [e-mail]

[Madlegs1]

Sue has given you really good advice.

I strongly suggest that you print it out and pin it up somewhere that you will see it at all times.

Do not be deflected by anyone.

[Wordsworth99]

Hi Mikatrap, I feel for you. That’s such an awful time you are going through! You have continued to work through this, day after day after day so you must be a very, very strong person, and I feel sure that you can do this!

You wrote: “Could I suffer from kindling from DAs? Or from benzos?” Yes definitely. I looked up ‘Kindling’ in Wikipedia as I’d never come across this word, and it’s possible for benzos, perhaps DA’s. From the description, I would say you are.

You also asked “Did they do a permanent damage to my brain by stopping my DA cold-turkey in Oct? Could I get out of this hell one day? Could I fully recover?” While permanent damage is possible, I firmly believe in the plasticity of our brains. They are quite amazing in the ability to adapt, grow, change and recover. It just might take some time. So hang in there my friend, you can and will get better!! We are all here for you, thinking of you and hoping that each day you get a bit better. One step at a time, and one day this will all be behind you!

[Mikatrap]

I come back from my 6th stay at the hospital since the beginning of this DA-withdrawal nightmare. My neurologist could witness one of my pain + tremor crisis, and it is in fact an extremely severe and painful RLS crisis. Most of my physical symptoms are RLS, and the rest + the psychological symptoms are DAWS. So originally my RLS was mild, then it became really annoying with DA augmentation, and now it is extremely severe with my DA withdrawal, to the point that I'm not functional anymore and can spend days at home crying out of pain.

These last two days, my pain was so extreme that I had to alternate between Tramadol and Clonazepan (which knocks me out) all day. I have the feeling that Wellbutrin is worsening it further, so I'm gonna stop it.

It's really hard to believe for me that I will go out of this dark pit