I am desparately in need of help with managing Restless Legs Syndrome, Nervous System Hyperirritability and Severe Depression all flared up by a herx on Levaquin. I am becoming less and less able to be available for my three year old son and he's starting to show behavioral issues as a result :-( I see him starting to internalize my need to escape in a book or food as something he has caused.
Has anyone out there found a combination of medications that helped? Unfortunately every antidepressant I've tried either flares the Restless Legs or the Hyperirritability/Lyme Rage any of which leave me incapable of caring for my son.
Thanks in advance for your consideration, Denise
Posted by lymie tony z (Member # 5130) on :
Sorry you're feeling crappy Denise...
Unfortunately I don't believe an anti depressant or anti anxiety alone is effective...
Because as I experienced these two...if I was on one or the other...when my lyme induced anxiety hit...if I was on an anti depressant...I became manic...
If I was on an anti anxiety med and lyme induced depression hit...I went really really low(yes suicidal).
Paxil seemed to bridge the gap for me but I did'nt like what I might go thru if I ever stopped the paxil so I came off of it very soon.
I did'nt like the thought of taking any psychotropic drugs...but....I finally started lexapro...I have been on it a couple years now...
Others have had successes and failures with ssri's However, given the bipolar type symptoms a lot of we lymies seem to present... We have to take care of both sides of these lyme induced tendancies.
Experiment...
I hope you can get off of levaquin soon...It will also cause tendonitis in a lot of folks...it did me... Ask your pharmacist if it causes other stuff...I can't remember what if anything else it caused in me...psychologically.
Good luck..........hope this helps....zman
Posted by lesley1954 (Member # 7626) on :
I have taken .5 mg of klonapin at bedtime for restless legs for many years and it continues to be effective where other of the restless leg medicines were not (or became ineffective and caused a lot of rebound pain). I am also finding Neurontin helpful for hyperirritability, especially in calming my bladder at night and helping me sleep 4 or more hours without waking to pee.
I have less to offer in terms of the severe depression. It is obviously something that needs to be taken seriously and monitored closely. I have had periods of deepening depression from certain meds, especially tindamax. I now pulse it only 5 days/month. My LLMD is OK with that, but I wonder if it is good enough. Still by day 5, I usually can feel my mood starting to plunge.
I agree with zman that it would be great if you could get off Levaquin, assuming that is contributing to the worsening of your symptoms. Make your LLMD aware of the problems it is causing you. Is there a Lyme literate psychiatrist you could consult with about meds?
Posted by docjen (Member # 7510) on :
Hi Denise!
I suffered with RLS for years, and have only in the last few months been able to cut down on my meds. The 2 things that have been helpful for me have been Klonopin 1mg at bedtime, and dopamine at bedtime. You might want to talk with your doc about one of these. My symptoms got much worse before they got better. I found that it was really crucial to get a really good night of sleep.
Good luck! I know that RLS can really be horrendous to deal with, and if you haven't experienced it, people really just can't understand how awful it is.
Jen
Posted by DeniseS (Member # 7276) on :
zman, lesley and jen,
Thanks so much for your replies! It means so much to be able to get advice from folks who have been there!
It sounds like there are meds out there that work. Can you tell me about how you figured out what worked? How did you choose? Did you rely on your doc's opinion? Did you do the RLS med first and then add the antidepressant? How long did it take? What kind of doc helped you navigate this?
Another issue underlying this for me is that the side effects of the RLS meds scare the #*&% out of me! I guess I've come to terms with the abx side effects but I have not come to the same place with the RLS drugs.
I have a two week starter pack of Requip for RLS but I'm scared to death to start it. I haven't been able to find a local psych to help me although I have calls into a couple - associated with Stanford so I'm not psyched about having to defend myself against the onslaught of anti-Lyme stuff.
I'd love to get off the Levaquin however I read somewhere that Levaquin is the only med for treating Bart that he hasn't seen a relapse with. Two of my three LLMDs have suggested that I might want to get off the Lev however the third has the approach of treating in 3 to 4 month stretches with any med. In one case I got off a med sooner and I regretted not doing the full course. THat's the doc that gave me the Requip.
The nearest LLMD/Psychiatrist I've found is a two hour flight away. I may just need to take the flight. This doc will rx over the phone after seeing me in person once. One of my LLMDs seemed to think that was a bit dicey but none of them seem to have the experience I need in this situation. The out of state doc seems to and also seems well set up to handle ongoing balancing of meds as she bills in 15 min chunks of time.
I could also start the Requip and then just get over calling that doc's office as often as I need to to make adjustments in the meds. I'm nervous about that one because it's so new. My psychobiology class in college really gave me the willies about any drugs that effect Dopamine. Did you all have any of the nasty side effects?
I'm trying to stick it out here but I guess I also have to keep in mind not to take myself out in the process.
Thank you so much! Denise aka Nervous Nellie
Posted by lesley1954 (Member # 7626) on :
Hi Denise, Wow, it sounds like you've been getting by without anything for RLS. I can't imagine how hard that must be. My initial prescription for Klonapin was from a sleep specialist/neurologist who had RLS himself and came years before I would be dx with Lyme. Now my LLMD writes my klonapin prescription.
I took Mirapex, which I think is similar to Requip, for a week or so. It worked great for my RLS, but caused me absolute insomnia. Literally, no sleep for about 4 nights. Some people apparently get sleepy from it and others insomnia.
Good luck.
Posted by chroniccosmic (Member # 7789) on :
Denise,
My husband has had restless legs since he was in college, basically 25+ years. Has tried everything under the sun and we had to sleep in two different beds.
His brother in law is a MD and tried many different meds on him, interestingly enough they would drug him and he would sleep but his legs would move and kick anyway.
What worked was a chiropractor who specializes in upper cervical adjustments. Don't exactly know why but we had many friends referring us there and it worked. He sleeps like a log now and it will flare up occasionally and he gets adjusted again with immediate relief that night.
Don't know whether you are into alternative stuff but I thought it was worth mentioning as it has been a huge difficulty in our sleeping over the years.
Posted by char (Member # 8315) on :
Hi,
My daughter could not tolerate Levaquin. I am wondering if either it is not the right med for you or perhaps you are "toxic" in need of a break from the levaquin.
My girl has a mild case of restless legs. She takes Zithromax as her abx and clonopin. She is making slow steady progress overall including the RS. I am pleasantly surprised as I didn't think Zith at 400mg MWF (stomach problems) could do that much. Perhaps her immune system is waking up.
I am real sorry that you have been suffering with all this! It really does get better. Hang in there and keep us posted!
Char
Posted by shizuko (Member # 8213) on :
I have had RLS since about 10 years old (or could be younger, can't remember), and I am 45 now.
I don't think it was started as part of Lyme (I think I got Lyme 20 years ago), but it has getting worse since I started taking ABX in March when I was diagnosed with Lyme.
I have been taking Requip for over 2 years, and it was working pretty well untill recently although I did have to increse the dose occasionally but only slightly.
Now I am taking 3 mg of Requip per night, and I still get restless some nights, needing to take more, which usually does help.
I just hate this creeping feeling that comes on, not just in my legs but in my entire lower body!
It started early in the evening/late afternoon as well as early morning.
I have to deal with chronic pain, but I can still live with it. RLS, I can't....
I did try Klonopin for a few months before increasing Requip, but it didn't help me with anything.
So, I am willing to take high dose Requip despite its possible side effects, at least for now.
shizuko
Posted by lymie tony z (Member # 5130) on :
I've had RLS seemingly all my life...
My mom used to call me her perpetual motion machine.
Anyway...try some evening primrose before going to drugs...
OMIGOD! Did I suggest an herb...quick...somebody smack me hard!
LOLOLOL
zman Posted by DeniseS (Member # 7276) on :
Oh my gosh, you all are so wonderful. I've never felt as much need for support and understanding in my whole Lyme journey as I do now.
I've got calls out to a bunch of psychpharmacologists and a sleep doc. One has a 3 month wait (I'll be off Levaquin by then), another has full practice. We'll see what kind of feedback I get as the week progresses.
I actually had my best day today since the worst of the Levaquin. Still had some sx but I cooked dinner for the fam and I'm still functional tonite. I love good days! We'll just have to see how tomorrow goes.
Lesley, unfortunately the awesome PT/Chiro I see hasn't been able to get me consistent relief.
z-man, I got an e-mail to try Vitamin E and I'll check out the Evening Primrose, too - I've never taken that. And I definitely work with many different modalities of tx - I really want to beat this bug - it's my life focus right now and the best investment in my future and that of my family.
Char, thanks for the support. I'm constantly weighing whether to get off the Levaquin. One of my docs told me that if she gave Levaquin to a pt for some reason (other than Lyme) and they had the rxn I'm having, she would start suspecting they had Lyme (or Bart). She is that confident that this is a herx. It's just so strange to have made such slow steady progress and to have gotten used to a certain pattern in my tx and then to just get blown out of the water with a herx like this. I felt quite a bit better b4 the Lev but there were nagging issues remaining and I think, I hope, that carefully going thru with the Lev is going to get me way far forward. I guess I'm a glutton (although a cautious one) for progress.
Well that's my update for now. Thanks again, D
Posted by JeffM (Member # 8919) on :
Denise,
I have had all these symptoms and continue, at times to have them.
Helpful for me: .5 klonopin for restless leg .5 xanax for irritability/ a form of anxiety 10 Watmg prozact, to combat underlying despair over being so ill tramadol and morphine, used wisely, tol get at the pain before it drives you crazy medical marijuana -- especially for nausea and anxiety and sleeplessness (I take very little. . . I am a square lol and dont like being stoned) Ambien 10 mg. Hot, hot bathes with epsom salts, daily or twice a day Walking or sitting in nature Watching the cloudes go by Meditation
Posted by lymie tony z (Member # 5130) on :
Holy Cow Jeff,
How the heck do you know WHAT'S causing what with all those chemicals running thru your system??
You're going to eventually have to clean your system.
Good luck!
Zman
Posted by JeffM (Member # 8919) on :
Zman,
I know what is causing them. Lyme and Herx die off.
I took nothing until the herx almost killed me.
I need these antidotes occasionally otherwise the herx and/or lymewould overwhelm me.
I dont talk morphine every day for a while. When the pain stopped, I stopped. No withdrawl, nothing. Now, If I have a really bad herx I will take a morphine,
It's that simple.
No more marijuana for me. I dont like the sideeffects.
Without an arsenal of medicines that can address symptoms arising from herxes, if one (me) has a huge bacteria load and 18 years of the disease, I could not have made it thru the tx.
Jeff
Posted by Aniek (Member # 5374) on :
Denise,
I developed a motor tic disorder during Lyme treatment. It was accompanied by other symptoms similar to RLS, including an anxious feeling and a need to move.
It has reduced significantly in the last few months since I've started working with a doctor who uses alternative medicine. He diagnosed me with autonomic neuropathy, which is a problem with the autonomic nervous system.
The cause was the years of Lyme and the medications adding stress to my system. His treatment is amino acids targetted to my amino acid deficiencies and lots of B-12 (sublingual throughout the day in smaller doses with folic acid).
You may want to try and find an alternative doctor to work with. I work with this doctor, who is an MD, in conjunction with my LLMD. It's really amazing how the motor tics have been almost eliminated. Honestly, I didn't even think about it until I read your message.
Posted by DeniseS (Member # 7276) on :
Wow Jeff and Aniek, can you believe I resonate strongly with both your vastly different approaches.
I have strongly considered asking for opiates to help me through this time. Unfortunately my sx have been unrelenting while on Levaquin (a long herx?) so I'd have to be on opiates all the time I'm concerned that my body would habituate to the opiates. At least I'm taking enough Vitamin C and magnesium to keep by bowels moving if I were to take opiates :-) LOL. I also really like the fact that our brains make endogenous opiates - that makes me more comfortable with taking exogenous ones.
On the other hand, I've suspected that something is wonky with my autonomic nervous system. And my sister used targeted amino acid therapy to cure herself of chronic fatigue so that's something I've also considered.
I have an LLMD apptmt tomorrow and I might fly to see an LLMD/Psychiatrist next Tuesday or Wednesday so I'll be sure to include these items in my long list of questions.
Had a good day yesterday but today I'm back with a headache, restless legs and bursts of adrenaline when I get woken up in the middle of my nap. And so it goes.
It means so much to me to get all your feedback. You're really helping me through this! Thanks.
Denise
Posted by DeniseS (Member # 7276) on :
Hi Sue,
Sue, Thanks so much. I have gotten some great advice. You folks are the best! I've cleared out my PM box.
I'm headed for a Seattle area LLMD psychiatrist in a week. I'm getting closer to relief. Felt awful again today. So lucky my DH is so supportive!
Denise
Posted by hopeful123 (Member # 3244) on :
i take wellbutrin cr(?) and paxil and buspar. at night i take amitriptaline 10 mg. makes it somewhat possible to get through rough times and get some sleep. when i can't sleep no matter what, i take sonata (low dosage) a couple of times a week (max). my doctor said if i don't get sleep, i won't get well. the wellbutrin and paxil help with concentration and focus. the buspar is for when i spinning around in my head with constant negativity that prayer or meditation won't fix. i would love to someday be off of all this stuff. that would be a real treat.
Posted by chroniccosmic (Member # 7789) on :
Denise, I would love to hear feedback from a LLMD-psychiatrist if you don't mind sharing when you return.
Thanks.
Posted by DeniseS (Member # 7276) on :
Thank you all again from the bottom of my heart. I'm sorry I have not been able to reply to the wonderful PMs. I'm just been too maxed out.
Got a great boost from my LLMD this week. He's pressing me to make plans to go to medical school because he expects me to be well enuf to do it by the Spring! Shocking but I trust him. It seems that the flare in these sx may be a Bart herx on Levaquin. I've got six more weeks to go.
I will absolutely report back on what the LLMD/Psychiatrist sez. I've finally realized that I really need a doc to hold my hand while trying out these types of meds. My system is just so sensitive and I've had some horrible rxns. My LLMD encouraged me to go see this doc. LLMDs have to know so much about so many body systems that it makes sense to see a specialist in this case.
Best to you all, D
Posted by lymie tony z (Member # 5130) on :
The levaquin may be causeing you tendonitis pain....
Please be careful with psychotropic meds...
It took me awhile to find one that works for me with minimal side effects...or because now my chete load is a lot lower than it was when I was put on.... Buspars....messed with my equilibrium xanax,zoloft and amytriptiline...made me a zombie...and gave me a heck of a sweet tooth....
prozak...gave me panick attacks... Wellbutrin....did nothing but get me ****ed at everyone.... Paxil seemed to work but I did'nt stay on it long enough for fear of suffering the REALLY bad electrical shock withdrawal one may experience when comming off of...
There were others until I got on lexapro and stayed on it now for three years...
also all of the neurontins,gabapentons and anti seizure like meds did nothing for me...
but have helped some folks...
good luck.........zman
Posted by Aniek (Member # 5374) on :
Denise,
I just want to add that you shouldn't be scared of taking pain medication if you need it. I've been taking Vicodin for 2.5 years with no bad effects. I've had to increase the actual dosage, but there are days I take none.
The only thing is it will add stress if you have autonomic nervous system problems. And your sensitivity to the meds really suggests you might.
Posted by lymeout (Member # 8045) on :
Denise, My daughter developed a creepy-crawlie sensation that started in her back and chest, then settled in her rear-end, of all places! It is the same sensation, I think, as RLS. It all started with a ketek herx. After nearly a year of oxycodone, which was a nightmare - trying to keep short-term prescriptions filled, lessening effect, etc, the doctor put her on methadone. It has made a world of difference in her comfort level. But we are trying all kinds of alternatives, including acupuncture, to try to resolve it, so that she doesn't have to remain on the methadone.
This has been the one symptom that has nearly driven her over the edge.
I don't know that the acupuncture will eventually resolve it, but it has helped in so many other ways! She says that her acupuncture sessions are the the only time she feels totally relaxed and comfortable. She lives for them!
Posted by savebabe (Member # 9847) on :
I was wondering if anybody has experienced just burning in the thighs and calfs with RLS? It seems to go along with feelings of nervousness and depression. Any thoughts would be helpful. Thanks.
Posted by DeniseS (Member # 7276) on :
In response to chronic cosmic's request, here is what I came back with after visiting an LLMD/Psychiatrist. Please keep in mind that the LLMD asked a lot of detailed questions to understand my particular sx.
Zoloft 25 mg to start for depression (because it worked in the past) increase by 25 mg every 4 to 5 days level off when effect is good Target is 100 to 150 mg (back off 5HTP to 50 mg)
Klonapin .25 mg to start at bedtime for RLS shouldn't need more than .5 mg (could also counteract decrease in GABA from Levaquin, could try cutting a chip off pill and taking it during day as needed) K is a longer acting benzodiazapine so it might help me avoid the rebound effect of increased irritability I had with Xanax. It has a serotonin component so it is a mood stabilizer.
Start Zoloft and Klonapin at same time for a week before adding other meds since side effects of Z & K should be easy for LLMD/Psych to distinguish and since Klonapin should offset the increase in RLS caused by SSRIs
Oxycodone 5 mg (ended up being switched to hydroxycodone due to problems with differenes in state laws re rxs) Take apart from Klonapin Try half a pill if want to be cautious
Add Oxycodone if Klonapin doesn't work or alternate between K and O or taking O during day as needed
Stay on GABA increasing herbs (2 TranquilNite softgels by New Chapter) since they support the body's own manufacture of GABA (instead of interacting with receptors) and won't interfere with the other meds listed above.
Provigil for daytime fatigue and for mood "brightening" Chip off 100 mg tablet could be agitating, watch for anxiety
In the future, this doc may add Lyrica starting with 1 at bedtime to aid getting to stage 4 sleep. Doc also mentioned the possibility of Xyrem (gamma hydroxybuterate) which also aids getting to stage 4 sleep but it could flare RLS.
For RLS, doc suggested (as an aside) trying DopaBean by Solaray which is an herbal L-Dopamine.
For reference, the sx I discussed with the doc were: adrenaline hits when startled mental fog hypoxia hypoglycemia insomnia (mainly difficulty falling asleep) RLS depression hyperirritability headache, joint and muscle aches
Hope that helps, Denise
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