Got to see the new neuro today. He seemed personable, though not particularly cluster-informed. I did expect that, and only hoped he would be amenable to my suggestions. And he was. He allowed a prednisone taper, increase in lithium, and added gabapentin to help with co-morbid migraines and sleep.

However... I was on the way to pick up my prescriptions at the pharmacy when I got into a bad car accident. Everyone is okay, if banged up, but the car is totaled. I never made it to the pharmacy. However, I remembered a really old prednisone script I'd never taken from years back. So I took the first day's dose, which amounts to 24 mg. (I didn't notice the instructions to spread them out, so I just took 24 mg all at once.)

The taper I do have is for 24 mg (split doses) day 1, 20 mg day two, 18 mg day three, 12 mg day 4, 8 mg day 5, and 4 mg day 6.

What I'm wondering is, does this sound like a reasonable pred taper for cluster HA? It may be some time until I can get back to the pharmacy, so I'm dearly hoping this will be a reasonable approach for now. The neuro has me increasing my lithium dose, which I will be able to do with the current supply.

Any concerns, kicks-in-the-butt, ideas?

I've never gotten any real relief unless I started at 80mg.

80-80-80-60-60-60-40-40-20-10-5

Duly noted. I do have the rest of the dose-pack until I can get to the pharmacy. Have you been precribed 80 mg to start, all at once?

I'm with Brew. I go 80 on down, although historically I get complete relief at levels as low as 30 mg a day. He had me spread the dosing out, I take 20 mg pills, 4 times a day to start, then 3, then 2 then I break into the 5 mg bottle.

Joe

Quote:

Have you been precribed 80 mg to start, all at once?

Yes. Whenever I've been on prednisone, I was always told to take it once per day, right on waking in the morning. It most closely mimics the body's production of adrenalin (which it is replacing when going through prednisone therapy).

Thanks guys! Brew, your dosing reminds me of why I should have taken the pred in the morning. Wide awake now, of course, at 2:45 am. My usual cluster occurs at about an hour from now. Tempted to take more pred, but I won't until tomorrow. If no results, I'll up the dose.

The new neuro had to go look up the right dosage for lithium + clusters, but eventually came back with what I suggested (900-1200 mg, I think Joe has said). That's a good sign, I think. He also said that while my next appointment is two months away, that I stay in touch via phone. This is a huge deal with the practice I go to, because the last guy never returned phone calls even two months after the fact. He's got me ramping up the lithium week by week.

My only concern is that he didn't seem to think I needed regular blood tests for lithium levels. Aside from extreme thirst and shakiness, I'm not sure what the serious signs of lithium toxicity are. I want to titrate up properly, but I have no real idea what the target is, and what side effects are dangerous vs. annoying.

My prednisione tapers have started at 70 or 80mg a day, decreasing as per Brew's post with the dose being taken all at once in the morning too.

You mentioned a dosepak. It's possible this is may be methylprednisone. If it is, and I've been given it, the doses are lower but I understand the strength is higher. Your doses sound about right for the 5-7 day dosepak I've had in the past. blessings. lance

This was one of the more thorough articles I found on lithium toxicity. Obviously you are looking more at the Chronic toxicity then the acute as I doubt you'll be chugging a whole bottle at once! ;)

Joe

Lithium is a medication used to treat bipolar disorder (manic depression). This article focuses on lithium overdose, or toxicity.
•      Acute toxicity occurs when you intentionally or accidentally swallow too much of a lithium prescription.
•      Chronic toxicity occurs when you slowly take a little too much of a lithium prescription every day for a while. This is actually quite easy to do, as dehydration, other medications, and other conditions can easily interfere with lithium in your body and cause it to build up.•      Acute on chronic toxicity occurs when you take lithium every day for bipolar disorder, but one day you take an extra amount (as little as a couple of pills or as much as a whole bottle).
Symptoms
ACUTE TOXICITY
After taking too much lithium you will have symptoms such as:
•      Diarrhea
•      Dizziness
•      Nausea
•      Stomach pains
•      Vomiting
•      Weakness
You may also have some of the following nervous system symptoms, depending on how much lithium you took:
•      Coma
•      Hand tremors
•      Incoordination of arms and legs (ataxia)
•      Muscle twitches
•      Seizures
•      Slurred speech
•      Uncontrollable eye movement (nystagmus)
Heart problems may occur in rare cases.
CHRONIC TOXICITY
You will likely not have any gastrointestinal symptoms. Symptoms that may occur include:
•      Increased reflexes
•      Slurred speech
•      Tremors

In severe cases, you may also have nervous system and kidney problems such as:
•      Kidney failure
•      Memory problems
•      Movement disorders
•      Problems keeping salts in your body
•      Psychosis
ACUTE ON CHRONIC TOXICITY
You will likely get some gastrointestinal symptoms and many of the severe nervous system symptoms listed above.

Thanks Joe, that's what I needed to know!

And Lance, you're right. I do have methylprednisolone. I had a CH this morning as always, but it WAS less intense than usual. Fingers crossed.

Good luck with the new regimen. The prednisone always worked for me at 60 and then taper down.  In recent years I've had to start at 80 though and taper longer while something else ramped up.

Anything less than 80mg p day has never made a dent with me. There have been cases where I needed 120mg and intravenous treatment upfront to derail the beast.

Took all at once in the morning, with food and with a stomach protection med. Taking it in the morning also softens the possible insomnia symptoms.

The pred taper, contrary to a prevent like Lithium is designed to stop the attacks completely more or less immediately (within 48 hours or less) and to buy you time to run in your prevent. Based on your doctor's advice the dosage should be sufficient to achieve this.

My experience with Lithium is that you should perhaps try if 900mg gets you relief to start with and not start with 1,200mg. Over time (not over a cycle but over the years) Lithium's efficacy will decline and you will have to dose higher.

I have been on Lithium for several years and have never had a problem with it. Notwithstanding, be religious about regular tests.

After day one of pred, I've had two days' PF. Wooooo! Yes. I know this won't last, but I'm hoping that ramping up lithium will kick in soon. I'm only at 300 mg/day so far.

Sorry for the obnoxious self-reply, but just checking in with my progress so far. First of all, I had THREE PF DAYS while on the higher doses of methylprednisolone.  :D

Anyway, he has me increasing my lithium week by week. I'm to start at 300 mg, then increase to 600 mg the next week if no relief, then 900 mg the next week if still no relief. I'm a bit concerned that he scheduled NO blood tests for the lithium levels. At this point, not many side effects other than peeing more and my hands are shaky.

He also prescribed gabapentin, 300 mg at bedtime. He said it might help with my co-morbid migraines and with my sleep issues as well.

I'd love for anyone to chime in and let me know if this all sounds kosher.  :question

I never understood the ramp up on lithium (or verapamil, for that matter). It takes long enough to build up to therapeutic levels. If you were to become toxic, it would only be slightly. You could always back off if needed. The end result in my eyes is a few additional weeks of needless suffering.

I took Lithium for 10 years for another medical reason, 600mg is not even therapeutic (usually for BP), I took at one time 1800mg (5 years). For the purpose you guys are using it for, I couldn't see a need to taper that modestly, not a doctor, but ah doubt at 600mg you wouldn't run into too many problems it seems. I can remember starting at 1200mg, it knocked me on my !@$ but that was about it. The half life is not long either, I always had to use the ER (extended release) to get any treatment, it moves through your system fast--about a day. I'd post a link but not far enough up to do so.

About the common Kidney Concern, it's overstated, mine are fine, even after 10 years of heavy dosage. Just get a CBC and blood levels regularly and you are fine. If you are paranoid drink a ton of water to keep the kidneys flushed.

I've never heard of lithium being prescribed for blood pressure.

The manic portion of bipolar disorder, and sometimes for ALS, yes.

Sorry BP is what I use for Bi Polar Disorder. Should be more descriptive. It can also be used to "level moods" and assist with removing depression. I think it's a much better choice than much of what is out there today.

"What's all this fuss I hear about prescribing lithium for blood pressure?"

"That's bipolar. Not blood pressure. Bipolar."

"Oh. Well that's different. Nevermind."

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Well, frankly, I hate that term; prefer to call it manic depression it is a better description. Manic depressive psychosis was still common when I was diagnosed, so I am used to that(6, 1/2, dozen or the other). Anyway, sorry for confusion again.

wimsey1 wrote on Dec 27^th, 2012 at 8:43am:

You mentioned a dosepak. It's possible this is may be methylprednisone. If it is, and I've been given it, the doses are lower but I understand the strength is higher. Your doses sound about right for the 5-7 day dosepak I've had in the past. blessings. lance

I am SO glad someone brought this up!

When using the standard dose pack of methylprednisolone, going for the suggested 80 mg is like 100mg to 120mg of prednisone. Not a real good idea unless under direct supervision when it hits your bloodstream.

Yeah, I can imagine. I'm on the normal six 4-mg pills on day one, taper by 4 mg per day. I've been cleaning my entire kitchen with a toothbrush and feel like I won't sleep for the next ten years. Oh yeah, and also I want to eat everything in the entire kitchen and leave a bagged salad in the bathroom while sleepwalking. (I wish I was kidding.)

But man, even one day without that knife in my left eye... well, to hell with my damn joints. Get me a wheelchair.  ::)

Occasional use isn't going to do that to you. It's prolonged overuse that will get you into trouble, as in avascular necrosis.

Nice call Lance & Marc.  The Medrol Dosepack and a pred taper are two different animals!

Sounds all kosher to me.

All going well your Lithium is likely to kick in at around 900mg. All literature I have seen supports tapering L in and out gradually.

Excessive bathroom visits will go away and most likely so will the tremors.

Because of your current dose you neednt be worried about your blood test just yet. Check with your doc but I did my first one 2 weeks after reaching therapeutic dose. Then monthly and by now quarterly.

The tests are nothing to be paranoid about. Its like regular ECGs when you are on Verapamil. Its just that for some reason doctors are shit scared of prescribing Lithium. My neuro made me sign a disclaimer after I put a gun to his head for a prescription!

Its just that for some reason doctors are shit scared of prescribing Lithium. My neuro made me sign a disclaimer after I put a gun to his head for a prescription

My new GP went pale when I started talking aboout lithium and insisted I go to a neuro to deal with the lithium as he was not comfortable with it! :D

Joe

Hey all, I am sorry to here you have issues with getting Lithium prescribed. Seriously, I cannot understand the concern. The gold line standard for bipolar disorder is to try this first, for sake of privacy I will eliminate names, but can tell you all friends and family started on this first. Perhaps you could try a neuro-psychiatrist or just find another neurologist.

Honestly, I am perplexed, my neuro and a few others I tried use this as a preventative. I only stopped b/c like clusters through the years you have to adjust medications for bipolar disorder to maintain adequate treatment. Have you tried depakote with them? Depakote is doing the same job for me as Lithium, in fact, I like it better.

The only thing I can figure is the risk for overdose, but ah, I can name some drugs (like Zyprexa) that can carry far greater risks if one where to do such a thing or the medicine caused an OD. Neuroleptic Malignant Syndrome is a high probability in a lot of anti-psychotics. Lithium is a natural salt for Pete's sake.

Sorry to rant, I am just amazed and feel awful for you guys, it makes no freaking sense. Again, if you have not already tried it, try Depakote it works as well and is a great replacement for me. Best of luck.

Sorry to reply again, but a waiver? Are you serious? I hate to give suggestions, but maybe see if you can pass for bipolar and go to a psychiatrist, they don't have a problem writing for that stuff (least all the ones I met). The waiver just seems preposterous.

I'm not so much paranoid about the lithium as curious why neither my PCP felt the need to test for lithium levels, as I had to push both him and neuro for even a meager amount of prednisone AND lithium because of how "risky" each one supposedly is. And yet they brush off any kind of tests when I suggest them. ?

Also, I seem to run into a certain scenario often. I get advice from here (no doubt good advice), and I take that to my doctor. Then I end up getting something unknowingly similar, but different. (Like a Medrol Dosepak, instead of a proper prednisone taper. Or my PCP prescribing 30 days' worth of 4 mg prednisone per day.)

Do I just need to move back to NYC and see a proper headache clinic or what?

You present good questions. Regarding blood level tests, it seems bizarre for normally the doctors I have used want to establish a good "base line" to see if you are in therapeutic range. If you are, they prefer to continue to monitor you for, if anything, liability. They also monitor the levels to see if you need an increase or decrease in dosage. Blood level is crucial. Perhaps it is the time frame that you are on it, if not a long duration maybe there is not a need (?) again, good question it does seem odd.

Regarding risk, well it is established that I am not a doctor or pharmacist, but, from experience I can name far worse drugs. The risk with Lithium can only occur if they place you on way to high of a start dose, your kidneys already have issues and or if they do not monitor it if you are on it a long duration of time. Truthfully, I judge a doctor by what is in his office, if I see a bunch of freebie pharmaceutical stuff it is my last appointment--chances are he/she will write for the new stuff to get perks and claim all kinds of b.s. just to avoid writing what is proven to be effective. From a pharmaceutical rep, most of the crap out today is just reformulated stuff anyway (take this as a grain of salt, I only know a limited amount on this).

I cannot advise on the moving part, but I can tell you where there is a larger population the better there is a probability for finding better and more accurate treatment. In my area we have a much larger than average percentage of neurologists, you don't like him or her you can literally drive down the street in some areas and find another. No matter where you go, however, we all know how rare cluster headaches are, finding someone qualified is difficult. Mine is supposed to be and well sometimes I wonder if he isn't just confused, if all isn't just a crap shoot with him. I know of someone that attends UPMC Headache Clinic even the neuro there admits to  only seeing a few clusterheads, for what its worth.

Last, if you are in Richmond, you are about 3 hours from Baltimore, perhaps you could contact University of Maryland Health Center or Hopkins Headache Clinic both are supposed to offer great headache clinics. I see a Hopkins neuro but he is not part of the headache clinic, I am on a wait list for the Hopkins Headache clinic. If the wait is to long try Sinai Hospital in Baltimore they also have a reputable neurology department. Another option is MD General Hospital they too have a headache clinic, but I am not familiar with the reputation. The final option is Howard County General Hospital, look up their neurologists, they have some good ones and they are affiliated with Johns Hopkins.

Thanks for the thoughtful reply, BSBAQE12. I do think my doctors, including the neuro, have some conflicting messages when it comes to the lithium. Like you said, it's strange that they're so deathly afraid of it, yet brush off the need for ANY tests (in my case).

I was helping a lady troubleshoot her iPad yesterday when she stopped and asked if I was okay because she saw my hands shaking. And honestly, I think it may have been the gabapentin and not the lithium. I have some new, distinct symptoms that appeared only after adding the gaba. (Which is so far useless for cluster HA, but may be promising for sleep and overall mood.)

I'm at 600 mg lithium this week and next, to be ramped up to 900 mg if no relief. The gabapentin was added to help with sleep and maybe migraines, which I'm taking 300 mg at night. Not sure if it's working for that, but it does seem to put me in a rather calm mood about 2 hours after taking it.

I took the GABA for migraines; for that it worked wonders. However, the side effects were nasty, I became hostile, short-tempered and the trembles/shakes were a nightmare. For some, GABA does provide a calming effect and help them sleep. When I had the hand tremors I would eat something, only to find that it did not mitigate the shakes.

I experienced the same problem you have, Lithium at a balanced dosage did not cause hand tremors unless I was not eating 3 meals each day. Tremors can occur from Lithium; however, once someone gets adjusted to Lithium the problem tends to become minor or mitigated. Adding GABA to the mix though caused the same issue for me, my hands would shake wildly. I did not stay on GABA long enough to offer you any opinion on whether that can be reduced or not.