rudymoon quit drinking ten months ago

[rudymoon]

Sound good right?

 

Ha!

 

Seriously though, I'm glad to be done with my beer drinking. If I'm signed up for the forum, its because of the pharmaceuticals that have subsequently been thrown at me:

 

Ativan

Propranolol

Gabapentin

Trazadone

Benadryl

Unisom

Levaquin

Clonidine

 

There's a story behind each one of these, some far more sordid than others. I'd say that I'm free of not only alcohol, but all the rest, but that would be untrue. The only one on the menu for tonight may be Clonidine, but the rest are with me as sure as day. I hate them all, including the clonidine. They hurt me when I was taking the prescriptions and they are hurting me still.

 

The drug that brought me here today is the one that I thought the most innocuous, Gabapentin. I was prescribed the drug for peripheral neuropathy associated with Levaquin poisoning. I took 59 100mg capsules over a period of 29 days.

 

Last Wednesday night, I decided not to take my 3 x 100mg dose. I'd been having fits with my eyes, also related to the levaquin poisoning and decided that the Gabapentin was the culprit. 8PM passed, and I didn't take the drug. I didn't feel particularly bad, but I found myself wide awake a 2AM and it occurred to me that I should talk to the neurologist before quitting cold turkey.

 

At any rate, I IMMEDIATELY ran into trouble upon taking the dose of Gabapentin. Heart rate bounced back and forth between 70 and 140. BP was all over the place accompanied by intense palpitations. I didn't go to the ER because I figured that they'd kill me with kindness if I showed up. I rode it out, and by 8AM my vitals were back to normal.

 

I called the doctor's office and spoke to a nurse who spoke to her boss. She called me back and told me that the doc said to stop taking the medication. I asked her about a taper, and she said absolutely not (doctor's orders). I think that I'd been trying to have a seizure, BTW, and the doctor likely did too. She just never said that.

 

So, I stopped the Gabapentin...

 

For several days, I didn't sleep well, not even for my insomniac self. I was kind of queezy and uncomcortable. Then, Monday night, my BP went way up around midnight. This was something that I had been experiencing since tapering off of another drug, Ativan, that I took for almost three weeks in November. More on that later (if need be). I took a blasted clonidine for the first time in two weeks and slept fitfully for perhaps three hours.

 

So, I survived, right? Well, yeah, but as near as I can tell I'm sick as hell. The anxiety is intense and my BP is getting worse. I know that some people think that clonidine is wonderful, but it really aggravates and intensifies the insomnia that I experience constantly. It's still with me and I don't know if I can ever put it away now.

 

I've read through some of the posts, here, about Gabapentin withdrawl. Were it not for the symptoms that I've experienced, I'd be shocked. It seems like the stuff gets prescribed by doctors almost like candy. I don't believe that I can reinstate the drug and do a proper taper at this point for fear of seizure and death.

 

I'm really tired of all this, BTW. The last ten months have really been a kind of hell for me. I'm really, really exhausted now and my coping skills are just about "out of runway." Any help that the membership can extend to me in dealing with my "gabapentin issue" will be greatly appreciated.

 

Nice to meet you all and thanks for reading,

 

Rudy

[SkyBlue]

Hi Rudy,

 

Nice to meet you. A moderator will be along soon, but I just wanted to say welcome. You have found a good place! 

[rudymoon]

Hi Rudy,

 

Nice to meet you. A moderator will be along soon, but I just wanted to say welcome. You have found a good place!

 

Hi There,

 

Thanks for the welcome!

 

-Rudy

[rudymoon]

Anybody home???

 

J/k, it's early here. Slept from 2-3am. Anxiety is simply crushing. Can't breathe laying down because of swollen sinuses. No history of inhaled drugs,btw.

 

Doctors are pretty much worthless at this point. They know about levaquin poisoning and the damage that it does to the CNS and rest of body. However, there's no real treatment. "Floxed" is slang for the raft of symptoms that I'm exhibiting.

 

I came here looking for help with Gabapentin, but the doc wanted me to use cymbalta. He's a good example of my dilemma. I agreed to take the Gabapentin because I thought that it's not supposed to be as addictive or have as severe a withdrawal as many GABA-A drugs. Well, it's sure got me by the throat.

 

The doc apparently thinks that I'm not as bad off as I'm saying. His nurse didn't get back to me yesterday pm. I think he wants to pawn me off on another provider now. Patients who have unpredictable drug reactions are a pain and a liability. So it is that I'm left to fend for myself, seeking help on a forum like this one.

[scallywag]

Hello Rudy -- Welcome to Surviving Antidepressants (SA)

 

I hope you'll find the information in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but am glad that you found us.  Many doctors are undereducated to the extreme about these medications, particularly about patients symptoms after discontinuing.

 

Medications like gabapentin and Cymbalta aren't addictive in the same way that benzos and opiates are in that they don't create drug-seeking behaviour. As you've discovered they do, however, have effects on the CNS (central nervous system) that last well beyond many half-lives of one's last dose.

 

Thanks for completing a signature. Would you please add "mid-August 2016" or the start date for your most recent gabapentin exposure to your signature?

 

You went through a number of fast discontinuations from neuroactive medications between November 2015 and April 2016.  Unfortunately this  destabilized your CNS (central nervous system) and set you up for uncomfortable symptoms.

 

What information or assistance are you looking for?

[rudymoon]

Hello Rudy -- Welcome to Surviving Antidepressants (SA)

 

I hope you'll find the information in the SA forums helpful for your situation. I'm sorry that you are in the position that you need the information, but am glad that you found us.  Many doctors are undereducated to the extreme about these medications, particularly about patients symptoms after discontinuing.

 

Medications like gabapentin and Cymbalta aren't addictive in the same way that benzos and opiates are in that they don't create drug-seeking behaviour. As you've discovered they do, however, have effects on the CNS (central nervous system) that last well beyond many half-lives of one's last dose.

 

Thanks for completing a signature. Would you please add "mid-August 2016" or the start date for your most recent gabapentin exposure to your signature?

 

You went through a number of fast discontinuations from neuroactive medications between November 2015 and April 2016.  Unfortunately this  destabilized your CNS (central nervous system) and set you up for uncomfortable symptoms.

 

What information or assistance are you looking for?

First, thanks for your willingness to try and help me.

 

Right now, I'm in a pickle. I don't completely understand the meltdown that I've had with the gabapentin.

 

Likewise, I'm uncertain if I should try to reinstate it.

 

To the best of my knowledge, it had no sedative effect. I was prescribed it for nerve pain associated with a surgery and PN that I've had since taking levaquin. As I mentioned in my message above, I thought that it interacted with a different part of the CNS than benzos. This whole deal has really blindsided me and I get the impression that the doc thinks I'm full of bull.

 

If the drug was going to do this, was it because I took the dose five hours late? Jeez, the manufacturer dosing instructions for different ailments don't mention that. Neither do they indicate that doses have to be spread out over a 24-hour period in an attempt to maintain constant blood levels. Heck would that even be possible outside of an IV-drip?

 

I'm sorry, I'm getting off the subject.

 

Question: Should I try to reinstate the drug and attempt a taper?

 

I've begun to panic every time that I lay down and roll onto my side to try and sleep.

 

I was pretty fried before this started, and I'm having a perfectly dreadful time.

 

I thought that I was going to be okay without the gabapentin for five days after cessation.

 

The last 48 hours have me wondering if I'm going to survive this.

 

My turn for the worse is that severe.

 

Thoughts?

[rudymoon]

Thoughts anyone?

 

I'm asking because I need to get on with reinstating the gabapentin if I'm going to do it at all.

 

This takes place against a backdrop such that another CNS drug, Clonodine, will have to be used nightly to control my BP (as I've done for the last three nights).

 

It comes in .1mg doses, so I don't know how I'll ever do a slow taper off of that.

 

I'll just be trading one CNS drug that's shaping my brain for another, one that's even less stable and predictable.

 

If I'm understanding the issues in play, that's kinda scary.

 

Thanks for reading,

 

-Rudy

[herewego]

You are indeed in a pickle.

The moderators may be nervous to recommend an amount to reinstate because of your bad reaction to Gabepentin. But they could also be just conferring. If I were you I would ask the moderators 'If I had no bad reaction, what amount of Gabepentin would you recommend I reinstate on?' Then you would have options, though at your own risk.

Another unorthodox method to try would be to tough it out C/T for say 6 weeks so that your brain would require a much smaller amount to reinstate on, and then ask what amount to reinstate on (that way it would be a much smaller amount and you would be less likely to have the reaction that made your doctor have you go C/T).

The other problem you may be facing is will your doctor prescribe you any more so that you can taper? I guess you could try another doctor and not tell him your reaction that made the other doctor have you go C/T.

The only other thing I can think of to help you sleep a bit better (if you have trouble falling asleep) during W/D is melatonin. I think you can find the thread somewhere in symptoms and self-care. Too much melatonin can apparently have an adverse affect. It's apparently one of those things where less is more. If you can find 1 mg pills at your health food store you could cut them into quarters and take .25 mg (I could only find as low as 2 mg pills so I cut them into 1/8) and take it at night fall. When I take mine, I take it about an hour before I want to fall asleep. It doesn't help with early morning wakening though, only with falling asleep or resetting when you want to fall asleep. I worry it will lose it's potency so I only use for 3-5 days as needed when I find my sleep bad and having a hard time falling asleep, to say help me get through a wave and that seems to work.

Best of luck to you.

[rudymoon]

You are indeed in a pickle.The moderators may be nervous to recommend an amount to reinstate because of your bad reaction to Gabepentin. But they could also be just conferring. If I were you I would ask the moderators 'If I had no bad reaction, what amount of Gabepentin would you recommend I reinstate on?' Then you would have options, though at your own risk.Another unorthodox method to try would be to tough it out C/T for say 6 weeks so that your brain would require a much smaller amount to reinstate on, and then ask what amount to reinstate on (that way it would be a much smaller amount and you would be less likely to have the reaction that made your doctor have you go C/T).The other problem you may be facing is will your doctor prescribe you any more so that you can taper? I guess you could try another doctor and not tell him your reaction that made the other doctor have you go C/T.The only other thing I can think of to help you sleep a bit better (if you have trouble falling asleep) during W/D is melatonin. I think you can find the thread somewhere in symptoms and self-care. Too much melatonin can apparently have an adverse affect. It's apparently one of those things where less is more. If you can find 1 mg pills at your health food store you could cut them into quarters and take .25 mg (I could only find as low as 2 mg pills so I cut them into 1/8) and take it at night fall. When I take mine, I take it about an hour before I want to fall asleep. It doesn't help with early morning wakening though, only with falling asleep or resetting when you want to fall asleep. I worry it will lose it's potency so I only use for 3-5 days as needed when I find my sleep bad and having a hard time falling asleep, to say help me get through a wave and that seems to work.Best of luck to you.

Hi Herewego,

 

There was a detail that I neglected to add to the story of the gabapentin crash. I took the 300mg dose because I was wide awake. However, I didn't just take the gabapentin. I also took 100mg of magnesium and 10mg of sublingual melatonin at virtually the same time. I wouldn't be surprised if I washed it all down with the same glass of water. I suspected an interaction as I had been taking the gabapentin by itself in the evening without issue. There's no way to know for sure and I'm not about to repeat the combo in an effort to find out. Still, it's something to consider. However, if there's no putting Humpty Dumpty back together, so be it. I just don't know how I'll ever get off of the clonidine.

 

-Rudy

[rudymoon]

'If I had no bad reaction, what amount of Gabepentin would you recommend I reinstate on?' Then you would have options, though at your own risk.Another unorthodox method to try would be to tough it out C/T for say 6 weeks so that your brain would require a much smaller amount to reinstate on, and then ask what amount to reinstate on (that way it would be a much smaller amount and you would be less likely to have the reaction that made your doctor have you go C/T).The other problem you may be facing is will your doctor prescribe you any more so that you can taper?

Herewego poses a couple of hypotheticals above. Any thoughts on them? As regards the prescribing physician, his nurse called today and left a message. The recording said that I should go to the ER if I continue to have late night probs with my BP.

 

Edit: A question was raised about getting a scrip for gabapentin at a higher dosage. So long as I've got PN this bad, that's not going to be a problem. I planning on changing docs anyhow.

 

-Rudy

[ChessieCat]

Hi rudy,

 

Have you read About reinstating and stabilizing to reduce withdrawal symptoms?  It is gives lots of information about the variables relating to reinstating.

 

Here is the information about Tips for tapering off Neurontin (gabapentin) which includes how to get a small dose.

[rudymoon]

Well, I haven't reinstated the Gabapentin. However, I've now had to take Clonidine every day for the last week. As I mentioned up the thread, it's also a CNS drug (unlike other BP meds) and is modifying my brain the way several other meds have over the last ten months. As I likewise mentioned, this is a more dangerous and unstable med than gabapentin.

 

I'm taking .05mg to try and limit the impact, but it's not controlling my BP very well. I know that some people are given maintenance doses of this stuff, but my scrip was intended for emergencies. The doctor that prescribed the gabapentin is going to be no help in managing this, so the Internet is all that I've got for help putting both clonidine and gabapentin behind me.

 

Any thoughts as to where I should proceed from here? It was mentioned above that I might consider reinstating the gabapentin after a 6-week hiatus, whereupon I could slow taper from there. I don't think that a similar strategy will ever work with clonidine because the doses are too small and the drug too unstable.

 

Gentlemen?

 

-Rudy

[rudymoon]

Why the cold shoulder?

 

I found the forum through a Google search.

 

The results yielded a discussion of Gabapentin.

 

Believe it or not, there's just not that much out there on Gabapentin withdrawal.

 

This is particularly vexing given the truly minimal dosage and unexpected effects involved.

 

I need a strategy for overcoming the effects of this exposure.

 

However, I've also got to find a way out of using clonidine as a bandaid.

 

The cure in this instance is worse than the disease.

 

Complicating matters further is a devastating exposure to the antibiotic levaquin in April.

 

We're it not for the physical devastation wrought by fluoroquinolone antibiotics, I wouldn't be here.

 

I'm frightened because the physical aftermath has compromised my eyes and both Gabapentin and clonidine were/are making them worse.

 

That's why I'm so determined to find an effective exit strategy from these prescription meds.

 

The physicians involved in both the Gabapentin and levaquin exposures have headed for the tall grass.

 

Those two medications have made complete hash out of the GABA-A component of my CNS, and I need to get it settled down.

 

I'm in a fragile/dicey state and the medical community simply doesn't get ANY of this.

 

Here's a link to a letter of introduction that I give to doctors on my first visit now:

 

http://www.myquinstory.info/wp-content/uploads/2010/01/Dear-Doctor.doc

 

It was written by a physician named Plum who, like me, was poisoned by a flouriquinolone antibiotic.

 

About all that letter gets me from a doctor is a referral to yet another doctor and yet another prescription.

 

Four weeks to the day AFTER I took my last dose of levaquin, the FDA changed the guidelines for the drug and warned doctors to prescribe it only as a last resort.

 

The risks simply outweigh the benefits in most cases it said

 

If I end up in a hospital, I'll more than likely die from a drug-induced seizure as they attempt to "settle me down" with yet more meds.

 

That is my heartfelt belief.

 

Please help,

 

-Rudy

[scallywag]

rudy:  When did you reduce your Clonidine dose from 0.1 mg to 0.05 mg?

 

Please make notes on paper of both the times you take medications and when your symptoms arise, disappear or weaken.

[rudymoon]

I took .1mg clonidine from Monday through Friday night of last week, 8/5-8/9. The first dose came after what turned out to be my CT from gabapentin following a dose about 1:30am on 8/1. I cut the clonidine dosage to .05mg Saturday and Sunday night, but my BP went too high last night, so I had to take more. Total was 1.5mg. That's the way the stuff works. You add incrementally until BP is back to safe levels.

 

As far as administration, it's usually mid-evening. If my BP hits 180/100 (either number), I take the drug. That's the only symptom that I adhere to with clonidine. Anything else, I just try and ignore. i didn't use the drug at all from 8/20-9/4. It wasn't necessary. My BP was perfectly normal. Tonight, I'll play it by ear. However, I don't want to mess around with the dosing. By that I mean that I should probably go ahead and take a whole dose of .1mg.

 

BTW, I got the idea of breaking the tablets in two from a doctor who suggested it as a way of modulating the results. However, the practice isn't going to help me stabilize in regards to my CNS. Also, my CNS may be demanding the drug at this point. It's hard to say because I've gone for big chunks of days and weeks without it. Like I said,however, I don't know how I'll ever get rid of the stuff if it gets wired into my CNS.

 

The only other prescription drug that I take is 320mg Diovan, usually about 8am. Over the course of the day, I take the supplements cited in my sig. The lions share of this is 800mg of magnesium. I spread the supplements out to extend the benefits and reduce the detox load on my liver and kidneys. A common feature of fluoroquinolone poisoning is the damage done to the P450 detox pathway by the drug.

 

My symptoms, anxiety, nausea, headache, and such, are usually much better in the morning. They tend to worsen in the late afternoon and peak in between 6 and midnight. That's when I take the clonidine and that's when I took the gabapentin (9pm on the neuron tin). It's also when I drank beer and when I took Ativan for three weeks back in November.

 

Thanks,

 

-Rudy

 

Edit: Also ought to add that I'm a Boy Scout in the diet department. No sugar, caffeine, gluten or processed foods. Lots of lean meat and salmon along with antioxidant and inflammatory fresh fruit and veggies. Snacks are almonds and berries mostly. Feeling like complete hell at 10:13am. It's going to be a long day.

[rudymoon]

More on my clonidine history...

 

I was prescribed the drug for BP spikes in January. The pills were .2mg, and I was directed to take one when my BP hit 180/100 (either number). This occurred against a backdrop of attempts to control my BP with "cocktails" of multiple medications, avapro, norvasc and hctc, for instance. NONE of which controlled my BP, not even close. I took the drug 5-10 times over the next 2.5 month as the situation gradually improved. Further, I reduced the dosage by taking only half a tablet to keep my BP from going too low.

 

In mid-April I was given a levaquin scrip for a sinus infection. I was sick for the whole time that I took the drug, halting it after six (out of ten) days over the prescribing doctors objections. I felt somewhat better, but my BP began creeping up and the feelings of being unwell persisted. Two week out, I had to start the clonidine again, this time on a daily basis. After two weeks of this, I connected the dots and began researching flouroquinolone poisoning. I had been "floxed." The only question was, how badly?

 

I hit the panic button and found a nutritionist familiar with FQ toxicity. She's the one that put me on the diet and started me on the magnesium and other supplements. Among other benefits of Mg, it did a great job of controlling my BP. This situation was stable from mid-May until late July. I used clonidine several times in that period, but certainly not more than five. I'm keenly aware of the actual numbers because I still have most of the first refill remaining.

 

Then I inflicted a number of cruel setbacks on myself. These began with attempts to self-medicate for insomnia. I had read on forums about all manner of fairly benign drugs that can help with insomnia, unisom, Benadryl, b12/methyl cobalamin and such. Over a period of about ten days I alternated low doses of each to try and get some sleep. Not only did they not work, but I went from feeling good most of the time to feeling bad most of the time...and my BP started to creep up.

 

In retrospect, I think that I may have destabilized my CNS the same way as I did in November with the Ativan and in April with the levaquin.

 

On Tuesday 8/2, I began what would turn out to be almost three weeks of daily clonidine usage. The situation was exacerbated when I had a bout of diarrhea and took an adult dose of pepto bismol. I went up like a Roman candle. I hadn't realized that it contains 236mg of aspirin, NSAIDS being essentially poison to many people with FTS (fluoroquinolone toxicity syndrome). A week of absolute hell ensued, with symptoms worse than the original poisoning in April and May.

 

In the midst of all this, I paid a visit to a doc who gave a scrip for gabapentin . The drug was for painful neuropathy in my feet and hands. I took four or five 300mg doses over a period of days, but not necessarily consecutive. The drug helped with the pain, but made it difficult to hold my balance. More scary, I noticed that my breathing was labored when I'd lay down to sleep. Research indicated that gabapentin coadministered with clonidine can produce just such an effect, so it went back into the toolbox.

 

Toward the beginning of my third week of clonidine usage, my BP was stable enough that I could consider cessation. In hindsight, this may have been partly attributable to the several days of simultaneous gabapentin. I just don't know. What I do know is that there was a substantial gap in the days of overlap between two meds as I emerged from the clonidine usage. I honestly didn't know that gabapentin did anything beside make me dizzy.

 

I took gabapentin for twelve consecutive days directly on the heals of the clonidine seccesation for neuropathy. While I didn't feel great when I stopped the gabapentin, it took four or five days for the BP issue to reemerge and for me to appear here shortly thereafter. I'm back on clonidine until things, hopefully, turn around for me.

 

-Rudy

[rudymoon]

As advertised, this has been quite a day.

 

I've got a splitting headache and my eyes are very sore.

 

I'm also queasy/nauseated and anxious.

 

It's been this way all day long and my BP has yet to break.

 

High was 170/97/74 at 2:52pm.

 

That is a very high reading for the midafternoon.

 

Yesterday it was 115/75/68 at 2:53pm, so I'm definitely stressed out.

 

Spent some time on breathing exercises earlier, but not sure it moved the needle.

 

It's not really an issue of whether I clonidine tonight, but of how much.

 

-Rudy

[rudymoon]

Here are my meds and supplements for today so far:

 

5:50am - Mg and multi

7:15am - Diovan

9:30am - CoQ10 and Krill/Omega3

10:12am - Mg and multi and Vitamin E

1:15pm - Mg and D3

3:39pm - Mg and multi

 

The above schedule is slightly more accelerated than normal.

 

The Mg is 100mg cheated and the MV are three-a-day split in half.

 

Normally, the Mg really helps with BP.

 

Got the freight train running today, however.

 

This is the worst that I've been since the pepto bismol incident.

[rudymoon]

Bingo'd at 5:26pm.

 

BP 162/102/68.

 

.1mg of clonidine as appetizer before dinner.

 

Fought this all day.

 

BP at 6, 10, 2 all very high.

 

Will take second dose in 3 hours if needed.

 

That's the drill.

 

No way around it.

[rudymoon]

BP was down to 137/81/72 at 6:55pm.

 

Not perfect but a huge improvement over EVERY other reading today.

 

Dinner was 6oz grass-fed tenderloin, buttered sweet potato and green beans.

 

An interesting aspect of NOT eating processed food is that I have to remind myself to salt my food.

 

You gotta have salt to live.

 

7pm Supplements:

Mag + Multi + CoQ10 + Omega3 + Turmeric

 

BTW, I normally wouldn't take so many at once.

 

However, dinner was delayed and pushed some back.

 

Peak serum levels on the clonidine will occur between 9 and 10pm.

 

That's when I'll decide on additional Medication.

 

-Rudy

 

 

 

.

[rudymoon]

8pm BP reading 111/65/75.

 

That's almost too low for someone my height.

 

Hence one of the problems with clonidine.

 

-Rudy

[rudymoon]

9pm supplements and BP:

 

Mag + MV + E

 

135/80/73

 

The level of clonidine in my bloodstream will begin to drop now. Any sedative or mood effect has passed. Serum levels will continue to drop and be completely spent between 4 and 6am tomorrow. This is less than ideal, but it's what has to be dealt with.

 

If there's another spike, I'll have to take a second dose. This has occurred in the past, including during the pepto bismol flare. Right now, the anxiety and queasiness are returning. I can also feel myself flushing pretty strongly and becoming uncomfortably warm.

 

-Rudy

[rudymoon]

11pm supplements and BP

 

Mag + D3

 

127/80/60

 

The pulse rate is odd in that it frequently moves inversely to my BP this time of day. As it goes down, frequently into the low fifties, my BP tends to go up.

 

The flushing and other uncomfortable sensations have resolved for the moment. However, the history of this is such that the symptoms could return as I complete this post.

 

-Rudy

[rudymoon]

Had to take my car to get if fixed this am, so everything is jacked with the scheduling.

 

Last night I took a 1mg melatonin.

 

Slept fitfully until about 5:00.

 

Took a second 1mg melatonin and slept till 8:30.

 

That's a lot of sleep for me.

 

If doing melatonin this way is bad, PLEASE say something.

 

Other data:

 

12:00am - BP 122/76/63 took 1mg melatonin

 

1:59am - BP 129/80/55 woke up queasy and warm

 

4:59am - BP 131/85/59 queasy and warm, took 1mg sublingual melatonin

 

8:20am - took diovan 320mg

 

8:30am - BP 149/91/58, took Mag + MV + E

 

9:00am - Ate reheated potato and egg, took CoQ10 + Omega3

 

10:30am - took Mag + D3

 

10:45 - BP 142/85/65, ate a small Gala Apple

 

Definitely out of sorts today. Car problem didn't help. I'm trying to limit BP readings, but headache makes it hard not to be concerned about it. Can't handle stress at all. Just keying in this message got to me. I need to rearrange some medical appts, but I don't want to deal with them right now!

 

-Rudy

[rudymoon]

11:30am - Bowl of chicken broth soup + gluten-free banana bread muffin

 

1pm

 

BP - 129/82/65

 

Sups - Mag + MV

 

Hurt lower back getting out of courtesy car. Look like I'll be icing it today. Didn't need this right now.

[rudymoon]

3:50pm

 

BP - 106/72/71

Snack of almonds and red grapes

 

Feeling pretty good. Lower back is better since icing. Anxiety has dissipated. Don't feel as though I swallowed a bottle of drano right now. How's that for a reduction in BP from yesterday afternoon? The reading is what I'd characterize as normal for this time of day. Since coming off the Ativan last year, the problems have been in the evening...until recently.

 

Dilemma...

 

Apparently, my CNS is more stable now. To keep it that way, I believe that I'll need to take a dose of clonidine .1mg at some point. Guys, I can't do that with my BP at 106/72. It'll go too low. Likewise, I don't think that I should wait for medication until my CNS destabilizes again. Yes, I can follow up with clonidine, BUT...

 

Wouldn't that just reinforce my cycle of chronic CNS instability?

 

and

 

Is there any way to slow taper a .1mg dose of clonidine?

 

I've read the instructions on creating liquid solutions of pills and capsules, but those same methods look impractical for accurately and reliably brewing a .09mg liquid dose from a .1mg pill. That sliver of a dose is 1/10,000th of a single 100mg gabapentin capsule. The tools and tech suggested don't appear to be capable of supporting the tolerances that would be required.

 

Am I wrong in that last concern?

 

Thanks for reading,

 

-Rudy

[rudymoon]

7pm Details

 

BP - 124/78/70

 

Sups - Mag + MV + CoQ10 + Omega3

 

Food - Panera Salad and Soup

 

BP looks good but is erratic. Accompanying the fluctuations is increasing queasiness and neuropathy pain alternating with numbness. Uncomfortable sensation of being warm replaced with chills.

 

This would be a good time of day to establish a .1mg maintenance dose of clonidine if that's where I'm headed. I just hate to roll over in front of the drug.

 

Try and ask a question again...

 

Is it destabilizing to the CNS to take more than 1mg sublingual melatonin per day?

 

I've read that twice daily consumption of tart cherry juice helps with sleep (8 ounces supposedly contains about 1mg of melatonin).

 

-Rudy

[rudymoon]

9pm details

 

BP - 149/89/68

 

Sups - Mg + MV + E

 

Flushing and anxious, but not completely frazzled like yesterday.

 

 

Hah, I got so frustrated trying to use the forum UI on an iPad that it drove my BP up!

 

Still looking for help about issues like melatonin usage and clonidine tapering.

 

I'm finding information, but it's difficult to digest as I'm under a lot of stress.

 

I'd post links in the window but the UI doesn't appear to allow it.

 

Please help if you can,

 

-Rudy

[Skeeter]

Rudy,

A moderator should be along shortly.  Please try not to let yourself get too stressed out about liquid tapering.  If need be they will explain step by step, and even help with the math if you need some help.

 

I am glad you are feeling better than you were your first days here on the forum.  The people here are incredibly kind!

 

I am so very proud of you for being able to stop drinking after 30+ years!  That is a very amazing accomplishment!!

 

Good luck to you!!

Skeeter

[Petunia]

Hi Rudy,
 
I just read through your whole thread, I'm so sorry for what has been done to you, and for what you are going through now. From what I gather, you have CNS damage caused by a Fluoroquinolone type of antibiotic. As you have noted, they are notorious for causing the kind of illness you now have. Your condition has been exacerbated, most likely by subsequent attempt at trying to manage symptoms with more drugs, which can often do more damage to an already sensitized nervous system.
 
Those of us here who are recovering from antidepressant withdrawal syndrome have the same kinds of CNS issues, but caused by psyche drugs rather than an antibiotic. The cause if the illness may be slightly different, but symptoms are very similar and the recovery path seems to be the same.
 
I will try and answer your questions, but your situation is a bit complicated and some of it beyond my knowledge. I will ask for further help for you, please be patient, we will do our best to help, if we can.
 
Thank you for listing your medication and symptoms schedule, it helps us to understand what's going on.
 

Dilemma...

Apparently, my CNS is more stable now. To keep it that way, I believe that I'll need to take a dose of clonidine .1mg at some point. Guys, I can't do that with my BP at 106/72. It'll go too low. Likewise, I don't think that I should wait for medication until my CNS destabilizes again. Yes, I can follow up with clonidine, BUT...

Wouldn't that just reinforce my cycle of chronic CNS instability?

 
Recovery from CNS damage happens best in an environment of stability, healthy lifestyle, good clean diet and low stress. You are doing most things right and that's great. But I think you do need to focus on finding a way to stabilize on your current medications before thinking about tapering off anything yet. Stability is key, here are some general guidelines about how to keep things stable: The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.
 
I'm going to ask for some more help with how you might deal with clonidine specifically. I think in your specific situation it would probably be better to find a low dose which keeps your BP more stable, rather than what you are doing at the moment. You can taper off it later when your have recovered from the antibiotic damage.
 

Is there any way to slow taper a .1mg dose of clonidine?

I've read the instructions on creating liquid solutions of pills and capsules, but those same methods look impractical for accurately and reliably brewing a .09mg liquid dose from a .1mg pill. That sliver of a dose is 1/10,000th of a single 100mg gabapentin capsule. The tools and tech suggested don't appear to be capable of supporting the tolerances that would be required.

Am I wrong in that last concern?

 
I have no personal experience with tapering properly, because I used the breaking a pill into quarters method and then approximate crumbs after that, thinking it would be ok. But there are others here who have experience with tapering down to very small amounts using the methods we have in our tapering topics. It may sound difficult and complicated, but apparently, once you get the supplies and get the hang of it, its quite easy to taper down to very small doses even with tiny pills.
 
There is also the option of having a pharmacy compound your pills for you, they are able to make whatever dose you require if your doctor will write a prescription for it. Finding a doctor to cooperate is usually the hardest part. But we have tips for that too.
 
 

Is it destabilizing to the CNS to take more than 1mg sublingual melatonin per day?

 

I've read that twice daily consumption of tart cherry juice helps with sleep (8 ounces supposedly contains about 1mg of melatonin).

Many of our members find melatonin helpful for sleep. The idea is to find the lowest dose which works for you and stick with it. Often a low dose works better than a high dose, but whatever works for you is what you use. Here is our melatonin topic with more information:  Melatonin for sleep: Many people find it helpful

 

and more sleep related help:  Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

 

Here is the link to our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover.  Especially read the topics pinned at the top.

 

The important thing is to trust your body, that it knows how to heal and never give up Trust Your Body: Learning to Heal

 

Hang in there Rudy, I'm asking for more help from other mods.

 

Petunia.

 

 

[rudymoon]

Hi Rudy,

 

I just read through your whole thread, I'm so sorry for what has been done to you, and for what you are going through now. From what I gather, you have CNS damage caused by a Fluoroquinolone type of antibiotic. As you have noted, they are notorious for causing the kind of illness you now have. Your condition has been exacerbated, most likely by subsequent attempt at trying to manage symptoms with more drugs, which can often do more damage to an already sensitized nervous system.

 

Those of us here who are recovering from antidepressant withdrawal syndrome have the same kinds of CNS issues, but caused by psyche drugs rather than an antibiotic. The cause if the illness may be slightly different, but symptoms are very similar and the recovery path seems to be the same.

 

I will try and answer your questions, but your situation is a bit complicated and some of it beyond my knowledge. I will ask for further help for you, please be patient, we will do our best to help, if we can.

 

Thank you for listing your medication and symptoms schedule, it helps us to understand what's going on.

 

Hi Petunia and thank you,

 

It's very kind of you to have read my testament above, as it's pretty involved. The levaquin has obliterated parts of my body and now my mind is increasingly compromised. I'm going through a lot of bad spells. The simplest way to summarize my decline over the last six weeks is to state that I've gone from being okay most of the time, to being badly compromised most of the time. The difference is huge in terms of my ability to accomplish once simple tasks like negotiating y'alls forum interface. If I come across as desperate at times, it's because the "Windows" are growing smaller for me. When they finally close, I'll no longer be able to help myself. And I see doctors as nothing more or less than an absolute menace to someone in my position.

 

 

Dilemma...

Apparently, my CNS is more stable now. To keep it that way, I believe that I'll need to take a dose of clonidine .1mg at some point. Guys, I can't do that with my BP at 106/72. It'll go too low. Likewise, I don't think that I should wait for medication until my CNS destabilizes again. Yes, I can follow up with clonidine, BUT...

Wouldn't that just reinforce my cycle of chronic CNS instability?

 

Recovery from CNS damage happens best in an environment of stability, healthy lifestyle, good clean diet and low stress. You are doing most things right and that's great. But I think you do need to focus on finding a way to stabilize on your current medications before thinking about tapering off anything yet. Stability is key, here are some general guidelines about how to keep things stable: The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

I understand and I agree. The outstanding issue is related to what's going on with my BP when I go to establish a time of administration for clonidine. There's been an ebb and flow to my condition as regards this BP issue. I'll go for weeks with little or no issue. Then, my BP goes bezerk. The problem recently has been that this is occurring in the middle of the night.

 

I can establish a maintenance dose of clonidine to head this off but can't follow through if my BP is too low at time of administration. That's the rub with the whole concept.

 

I'm going to ask for some more help with how you might deal with clonidine specifically. I think in your specific situation it would probably be better to find a low dose which keeps your BP more stable, rather than what you are doing at the moment. You can taper off it later when your have recovered from the antibiotic damage.

Right now, the low dose appears to be .1mg. I tried .05 and had a very bad day/night. This could change in coming days. It certainly has before. And thanks for the attention and enlisting the aid of others on my behalf.

 

 

Is there any way to slow taper a .1mg dose of clonidine?

I've read the instructions on creating liquid solutions of pills and capsules, but those same methods look impractical for accurately and reliably brewing a .09mg liquid dose from a .1mg pill. That sliver of a dose is 1/10,000th of a single 100mg gabapentin capsule. The tools and tech suggested don't appear to be capable of supporting the tolerances that would be required.

Am I wrong in that last concern?

 

I have no personal experience with tapering properly, because I used the breaking a pill into quarters method and then approximate crumbs after that, thinking it would be ok. But there are others here who have experience with tapering down to very small amounts using the methods we have in our tapering topics. It may sound difficult and complicated, but apparently, once you get the supplies and get the hang of it, its quite easy to taper down to very small doses even with tiny pills.

 

There is also the option of having a pharmacy compound your pills for you, they are able to make whatever dose you require if your doctor will write a prescription for it. Finding a doctor to cooperate is usually the hardest part. But we have tips for that too.

This has really got me buffaloed. I'd have been MUCH more comfortable doing it with the gabapentin. The amount of drug to work with is very small. And, in my case, clonidine has been very unpredictable.

 

 

 

Is it destabilizing to the CNS to take more than 1mg sublingual melatonin per day?

 

I've read that twice daily consumption of tart cherry juice helps with sleep (8 ounces supposedly contains about 1mg of melatonin).

 

Many of our members find melatonin helpful for sleep. The idea is to find the lowest dose which works for you and stick with it. Often a low dose works better than a high dose, but whatever works for you is what you use. Here is our melatonin topic with more information: Melatonin for sleep: Many people find it helpful

 

and more sleep related help: Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

 

Here is the link to our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover. Especially read the topics pinned at the top.

 

The important thing is to trust your body, that it knows how to heal and never give up Trust Your Body: Learning to Heal

Okay, I'll keep experimenting with the melatonin. My sleep patterns are as bizarre as everything else right now, which is to say wildly erratic.

 

Hang in there Rudy, I'm asking for more help from other mods.

 

Petunia.

Thanks Petunia, and thank you and everyone else for your patience. I'm having to work on an iPad because it's so hard for me to read a computer screen these days. It's fine, but can be a chore to use forum software with/on. The clonidine makes my eyes even drier and i'm developing ulcers on my corneas. When they're gone, my ability to help myself through a venue like this will be at an end. Just want y'all to know where I'm coming from.

 

Thanks again,

 

Rudy

[scallywag]

Rudy -- to get a small dose of a medication in a liquid, the simplest way is to increase the amount of water.

 

Sometimes for simplicity with antidepressants or other psych drugs we suggest using the same number of millilitres of water as the dose of the tablet or capsule. For example, a 50 mg tablet in 50 ml of water yields a solution where 1 ml of the solution = 1 mg of the medication.

 

When your dose is 0.1 mg, that arithmetic makes dosing difficult, as you've concluded.

 

If you dissolve the clonidine tablet (or powder from the capsule) in 100 ml of water, the resulting liquid will contain 0.001 mg of clonidine per ml of solution.  With this solution, to obtain a dose of 0.09 mg you would need 90 ml of the solution. A subsequent 10% cut from 0.09 is 0.081, so you would need 81 ml of the solution.

 

Hope that helps.

[rudymoon]

Rudy -- to get a small dose of a medication in a liquid, the simplest way is to increase the amount of water.

 

Sometimes for simplicity with antidepressants or other psych drugs we suggest using the same number of millilitres of water as the dose of the tablet or capsule. For example, a 50 mg tablet in 50 ml of water yields a solution where 1 ml of the solution = 1 mg of the medication.

 

When your dose is 0.1 mg, that arithmetic makes dosing difficult, as you've concluded.

 

If you dissolve the clonidine tablet (or powder from the capsule) in 100 ml of water, the resulting liquid will contain 0.001 mg of clonidine per ml of solution.  With this solution, to obtain a dose of 0.09 mg you would need 90 ml of the solution. A subsequent 10% cut from 0.09 is 0.081, so you would need 81 ml of the solution.

 

Hope that helps.

 

Thought of a lab joke from high school chemistry class when I read your post above.

 

"if your not part of the solution, you're the particulate!"

 

I know, <GROAN>!

 

The pharmacy didn't have most of what I was looking for, but I'll keep at it.

[rudymoon]

Well, I'm back in trouble today.

 

Serious brain fog, headache, unease and BP too high to leave untended:

 

6:28am - 125/78/56

 

8:30am -145/87/59

 

10:59am - 170/102/71

 

12:26pm - 166/97/73

 

1:45pm - 156/92/74

 

Those numbers are in pretty stark contrast to the BP yesterday at the same time.

 

Supps and meds haven't changed, but I have had to deal with "medical billing" for several hours.

 

Last dose of Gabapentin was two weeks ago as of 1:30 this morning.

 

Is this Gabapentin withdrawal or my body demanding more clonidine?

 

If I see much more of this, I'll think I'll have to consider reinstating the Gabapentin.

 

I don't think that I can go chasing BP like this with clonidine.

 

I'm just too unstable right now.

 

Holding off on clonidine until 6pm.

 

Wish me luck!

 

-Rudy

[AliG]

I think eventually " hopping " off all drugs is the answer. Then, you can truly stabilize.

 

  If I see much more of this, I'll think I'll have to consider reinstating the Gabapentin.

 

See much more of what ? 

 

Chasing symptoms with more drugs is a never ending cycle.

Ali

[rudymoon]

I think eventually " hopping " off all drugs is the answer. Then, you can truly stabilize.

 

  If I see much more of this, I'll think I'll have to consider reinstating the Gabapentin.

 

See much more of what ? 

 

Chasing symptoms with more drugs is a never ending cycle.

Ali

As things stand now, I'm in the position of having to exactly that with the clonidine.

 

This is the second time in 48 hours that I've ignored my BP in an attempt to push the dose back into the early evening.

 

I'm doing so in an attempt to stabilize my CNS.

 

Suffice to say, this strategy isn't without immediate and fairly gruesome risk.

 

However, I do believe that I'll lose everything, one way or the other, if I start knocking down a clonidine every time my BP busts 180/100

 

It's just not intended to be used that way on a daily basis.

 

That really would be destabilizing to my CNS.

 

The drug is simply too unpredictable in my case.

 

-Rudy