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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Failing my prevents... ideas welcome.
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Message started by AppleNutClusters on May 17th, 2012 at 1:01am

Title: Failing my prevents... ideas welcome.
Post by AppleNutClusters on May 17th, 2012 at 1:01am
First, to get this outta the way:  yes, I use 02!  Lots of it, bless the stuff.  'Trex as an abortive as well, plus Batch's regimen and Redbull.  That being said, I really need a preventative that works.  Haven't tried lithium yet so yes, that's on the radar.  (Doc and I are both concerned with the side effects on that one, given my history.)

So.  I have tried, and spectacularly failed, Topamax.  It reduced my CH by about 50% at 100-200 mg/day, but I lost 60 lbs in 30 days.  Literally.  Docs won't let me try it again based on that, and the interminable nausea and diarrhea it caused.

Once I heard about verapamil, I was trying that.  First try, I got to about 25% CH reduction at 360 mg/day (IR)... and my lower body swelled so badly my doc freaked.  (No EKG was performed.)  So okay, this time around I'm on verapamil ER and at 360 mg/day and again... severe edema, heart palps, constant nausea.  Only this time I'm tempted to just hide these symptoms from the doc so he'll keep me on it.  I mean damn, I've got compression stockings, a no-salt diet, etc. and my poor body just seems to hate the verap.

Next visit with the doc is in a couple weeks.  He's not a neuro but bless him, he listens to my ideas.  So lay it on me.

Oh yeah, and I have a packet of geniuine Hawaiian Baby Woodrose, organic-style, that I just lucked into.  Just too scared to take 'em yet, based on side effects I read.  Plus the whole detoxing from Western meds bit...

So yeah, insights welcome.  And once again, am on the vitamins and 02.  But it's hella time for a good prevent.  I'm now 6 months into a cycle that only previously ever lasted 2.   :-/  So, lithium?  If so, how to convince my now-skittish doc to give it a go?  (Sorry for the ramble.)

Title: Re: Failing my prevents... ideas welcome.
Post by Bob Johnson on May 17th, 2012 at 8:36am
Good approach is to educate him with his own literature: print the PDF file, below, and give it to him.

Expect that folks will tell you about their experience with Lithium. It has a long history and so benefits, side effects, etc. are well known.
==
Message posted here:

Experimental preventive. As of  3/16/10, no medical information on PubMed but this information from Dr. Goadsby.
He reports that docs in the Los Angeles area have been trying as a preventive when the standard ones are not working and that good results.

Namenda (memantine hydrochloride) used for Alzheimer's patients and has more use with migraine.

For Cluster, clearly experimental now. Start low, Val found relief after working up to 15mg. (I should not jump to use unless you have exhausted the standard preventives.)

Information from: Val, on 3/16/10, in medications section.
===
Nice that you like your doc but, with tough situations, having a specialist on the team is worth considering. This is especially so because most docs have little useful education/experience dealing with Cluster. At the very least, might ask your doc if a consult with a specialist would make both of you more comfortable.
--
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.






http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

Title: Re: Failing my prevents... ideas welcome.
Post by wimsey1 on May 17th, 2012 at 9:10am
Given how little you seem able to tolerate a variety of drugs, we are going to be hesitant to suggest you try anything in particular. Your verapamil dose is on the low side, and you might play around with rapid release/er combo. Having said that, it sounds as if you are in line for a "coctail" of some sort. Combining a couple of drugs, perhaps at lower doses, in order to acheive the desired effect. Your doc will have to decide what that would be. Good luck, and keep us informed.
blessings. lance

Title: Re: Failing my prevents... ideas welcome.
Post by Guiseppi on May 17th, 2012 at 9:38am
I'll give you my experience of lithium. Well over 25 years as a prevent and pretty much zilch on side affects. I think it was in my mid 20's we started using it, I'm 52 now, episodic sufferer. We initially used 900 mg a day while on cycle, this would block 80-90% of my attacks. In my mid 40's we had to kick it up to 1200 mg a day as it was losing its effectiveness. At 1200 it still blocks 60-70% of my attacks. The only side efefcts I've had are you urinate a LOT the first 2 weeks, so pay attention to the literature to increase fluid intake. And there is a little lethargy, but nothing a cup of coffee won't alleviate.

I'm fortunate in that CH is my only medical issue that I take any medication for so I don't have "mixed med" issues so many others have to worry about. As Lance mentioned, some have to go with a "cocktail" of meds. The most common I've seen posted on the board is Verapamil and Lithium together. Given your issues it's definitely somehting you want to move ver slowly with. Wishing you luck and some pain free time really soon.

Joe

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on May 18th, 2012 at 6:28am
Bob, thanks for the info as always.  One thing I noticed is your dosing info for lithium seems wildly different from that of Joe's--are we talking about a different formulation?  Or is the dose range just really that big?

Thanks for the specialist info, already have it and working on finding a second neurologist.  My PCP referred me to the first neuro early on in my cycle, and that doc put me on Topamax...then left me hanging for two months of not returning my calls.  I finally called my PCP when I realized I'd lost 60 lbs in that time.  Suffice to say I'm looking for a new neuro, and my primary is handling things for now.

Lance, you and my doctor both.  I'm really struggling with this cycle in that the meds aren't working.  I can't believe I'm so special that nothing will work without intolerable side effects. The "cocktail" as you said with lower amounts of each drug makes sense to me.  Fewer side effects from each, right?  (Anybody need some empty medicine bottles?  I've got plenty.)

And hey Joe, thanks for your lithium experience.  I noticed you have been on it for over 25 years, but earlier Bob had posted that it's not mentioned on PubMed as of 2010.  How "experimental" from a doctor's POV would you say it is at this point?  My primary doc is the one prescribing right now, and he's got an extensive pharmacy background.  When I brought up lithium as a possibility and said "that stuff scares me", I think he said something like yes, it's powerful stuff or whatever.  IIRC, doesn't lithium have a narrow therapeutic/toxic range or something?  One of the concerns is I'm a smaller guy (125-130 lbs usually) and so far have been quick to develop side effects in the doses needed to prevent--just seems that lithium might be a problem in that regard with titrating dose.

I need to plant some seeds, maybe.  Thanks a lot for the advice guys.   :)


Title: Re: Failing my prevents... ideas welcome.
Post by Guiseppi on May 18th, 2012 at 8:41am
The dosing for lithium is based on how your body processes it, not on your body size. Different people just process the salt differently. When you first go on lithium, you start at a fairly low dose, say 300 a day for a few days, then you go in for a blood draw. Then you kick it up to 600 mg, then another blood draw. You continue to do this until you reach the "therapeudic" dose of lithium. All this is done while watching for any toxicity side effects. They're pretty obvious and easy to avoid with the initial close monitoring.

Now I start at 300 for a couple days, then 600, then 900, then finally 1200. Then I go see my neuro for a blood draw to make sure this level is still working.

It's certainly not an "experimental" med, but it is being used for something other then its labeled use. I don't need a neuro anymore for my CH treatment as I have it dialed in, and can use my GP to precribe the meds I use. The problem is, most GP's are scared to death of Lithium!!!! So they give me a referral to a neuro so they don't have to deal with the lithium. So I'm not suprised your doc is spooked by it.

Joe

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on May 19th, 2012 at 11:06am
Ah, that is very useful info on the lithium, thanks, Joe.  Including how my PCP might feel about it.  Would you say then that dehydration is the major concern, given your symptoms?  I ask because I know my doc will bring up my ER visit due to dehydration from Topamax. In all fairness, he's looking out for me but I keep pushing the meds because I'm so TIRED and maybe a little paranoid about going chronic.  I'm swollen up from verapamil all over (even my arms), but I have a few less CH per day so it's worth it.

Title: Re: Failing my prevents... ideas welcome.
Post by Brew on May 19th, 2012 at 11:50am
IMHO, lithium toxicity is the biggest concern. Stop taking it and get to a hospital immediately if you have:

1. Persistent diarrhea.

2. Vomiting or severe nausea.

3. Coarse trembling of hands or legs.

4. Frequent muscle twitching such as pronounced jerking of arms or legs.

5. Blurred vision.

6. Marked dizziness.

7. Difficulty walking.

8. Slurred speech.

9. Irregular heart beat.

10. Swelling of the feet or lower legs.

Avoiding toxicity

Be active in your own care. Lithium medication has to be managed and you have to be in the driver's seat.

1. ALWAYS take your blood tests exactly when your doctor advises.

2. PREPARE correctly for your blood tests. This means that for 4-5 days before testing don't forget any doses and don't take any extra doses. Also, your blood test should be done in the morning as close as possible to within 12 hours of your last dose.

3. Drink plenty of fluids each day, especially water and juice.

4. Do not go on any low salt diets.

5. Be careful about sweating too much or anything else that could promote dehydration.

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on May 19th, 2012 at 8:31pm
Brew, if I can go back to eating lots of salt, ya don't have to tell me twice!  Mmm, salt.  But thanks for the list of side effects, I appreciate it.  I'm starting to wonder what this list of meds on my record will look like if I have to start shopping for new health insurance... antidepressants, antipsychotics, mood stabilizers, antiepileptics, etc.  :-?

Title: Re: Failing my prevents... ideas welcome.
Post by Bob Johnson on May 20th, 2012 at 9:13am
Re. meds & your records: important for the doc to have a sharp, clear Dx of Cluster & the whys in the record and to note which meds are used for Cluster.

It's not unusual for meds to be used for purposes other than for the conditions under which it was first approved. Important only that each med be associated with the condition for which YOU are using it.

Title: Re: Failing my prevents... ideas welcome.
Post by japanzaman on May 20th, 2012 at 10:30am
Have you had any success using oral steriods like prednisone? I've heard of some people who tend to have the prevents work a little better by giving their head a week or so off with the steriods.

It may be that you are just experiencing a particularly nasty cycle. I think most people with long term clusters can mention at least one cycle where everything that usually worked did not work and lasted much longer than normal. Hang in there- this one will pass like the rest eventually.

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on May 20th, 2012 at 4:18pm
Japanzaman, yes, I've had some success with prednisone, but only when I had a high enough dose.  When I called and begged for another pred taper, I got 30 mg--as in, 30 1 mg pills.  Naturally that wasn't helpful at all.   ::)  Pretty sure my doctor won't go for another taper, especially with surgery coming up.  Certainly it wouldn't hurt to ask.

Title: Re: Failing my prevents... ideas welcome.
Post by japanzaman on May 20th, 2012 at 6:38pm
Pred would definitely not be a great idea if you are about to undergo surgery... you could find yourself in a whole world of trouble should you get an infection. Lithium may be your best bet for now.

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 2nd, 2012 at 8:39pm
Well, here I am 10 days from surgery. I was fortunate enough to develop an ear infection, so I'm on amoxicillin-clav for a week to dry that up.  I tapered verapamil (360 mg/day) on my own, as I just couldn't walk comfortably with my legs so swollen. Couldn't even get my shoes on! Ugh.  I continue pounding the Vitamin D at 50,000 IU per day (yes, I know, it's a LOT... so far no side effects, just no results). We'll see what Doc has to say on Monday.  >:(

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 4th, 2012 at 9:10am
(Quiet around these parts lately, so I'm hoping y'all have just managed to slay the beast and are taking a break from the site.)

I saw my GP today and had a talk about what meds I'm taking and what to do next.  I asked him what to do about the verapamil--specifically, every time I get near a dose that starts to work, I end up having to back off due to severe edema and heart palps.  The most I got to was 360 mg/day, and that's when I could no longer get my shoes on.  He thought I should give up on verp, and I agreed.

As an alternative, we decided to try nortriptyline.  We're both aware that it's more useful for migraine, but I also get those 3-4 days per week.  So we shall see.  I'm starting at 25 mg, so it may be a while before I know.  He is still very much against lithium and, given my side effect history, I also would like to hold off on that for now.  So this means that preventative-wise, all I have going for me at the moment is 25 mg of nortrip.  :-/

We stopped the D3 regimen today also, sorry to say.  I have been taking 50,000 mg *daily* for the past week, and 10,000 daily for the two months prior to that. He ordered the blood test to humor me, I think, so I should know in a few days.  Batch's vitamins just have had no effect on me that I can tell.  I may start them again at a more "normal" dose for the other benefits.  And I have a source for some shrooms, so that's on the horizon.  However, due to the surgery for my ear, it may be a while before I can detox the Western meds.  (Surgery is next week.)

02 and lots of Imitrex subQ continue to work quite well, thankfully.  So at least my abortives have not yet failed me.

Sorry for the long post... I would love it if anyone has further insights/suggestions for me. Or just a short pity-party and subsequent kick in the butt.   ::)

Title: Re: Failing my prevents... ideas welcome.
Post by wimsey1 on Jun 4th, 2012 at 9:49am
I'm sorry you are still searching for something that works. For what it's worth, I have not noticed the Vit D3 regimen doing much good for me either. In truth, not much has worked to keep me from having any hits at all. I just manage to manage them, and I am grateful I have aborts that work: O2, Imitrex and Migranal. Good luck with your surgery. God bless. lance

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 6th, 2012 at 6:42am
Thanks Lance, you're always ready with a kind word and it means a lot.  :)  I'm also grateful my abortives continue to work. After reading some of your posts, I also had my doctor prescribe Migranal to use as an alternative to the shots.  Separated by 24 hours, of course.  It works better for the heavy shadows and is less harsh on my body.  So there's that.  Anyway, thanks again.

Title: Re: Failing my prevents... ideas welcome.
Post by CHMatt on Jun 13th, 2012 at 1:09pm
I'm on amitriptyline (200 mg), cyproheptadine (20 mg BID), and verapamil (can't remember dosage offhand, but sounds like its not an option for you anyway).  You may want to look into those.  Cyproheptadine is an uncommon cluster treatment but it works for me.  It's generally prescribed as a children's antihistamine, so I think it's pretty low side-affect for most.  None for me.

I'm chronic but on the rare occasion that a cycle breaks through my year-a-round "3-way" above (yes, it sounds way more exciting that way than it really is  ;)) my neurologist added 10 mg of melatonin, which kicks in after only 2 doses.

I completely agree you should see a neurologist or headache specialist.

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 13th, 2012 at 11:59pm
Thanks for the input, CHMatt. So far the nortrip is just making me sleepy, but I desperately needed that too so I'll take it. I'll ask about the cyproheptadine for sure. Yeah, verap is out. Didn't help years ago, and even though it helped this time, I also like being able to wear shoes!  ::)

And now that the ear surgery is done, my next search will be for a headache specialist. I may have to branch out to Northern VA or NC.

Title: Re: Failing my prevents... ideas welcome.
Post by Akina on Jun 14th, 2012 at 4:04am
I don't know about VA, but down here in NC, I know we have Dr Finkel.  He's attached to UNC-Chapel Hill, one of our main teaching hospitals/specialty hospitals.

I don't have to the exact link (I'm on my phone at the moment), but there is a list of doctors, supplied by OUCH, that are knowledgeable of Clister Headaches.  I think someone will be around soon to supply the link.  That should help you narrow down a specialist to your area.

Hope you find one quickly, finding Dr Finkel for us has been a life saver for my husband and I.

Title: Re: Failing my prevents... ideas welcome.
Post by Mike NZ on Jun 14th, 2012 at 6:12am

Akina wrote on Jun 14th, 2012 at 4:04am:
I don't have to the exact link (I'm on my phone at the moment), but there is a list of doctors, supplied by OUCH, that are knowledgeable of Clister Headaches.


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Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 14th, 2012 at 8:33am
Akina, I have a good friend who lives in your area and could host me if I need to come down to meet Dr. Finkel. So I'm really glad to have your recommendation. And if/when I do, I'd love to meet up with another head-banger... are y'all open to a meetup sometime?  :)

Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 14th, 2012 at 8:37am
Thanks, Mike. I've been poring over the list, trying to make a decision off of names alone. Getting to a doc will involve help from friends and/or public transport, plus a healthy dose of $$$... so I'd hate to pick the "wrong" one! I should probably call and speak to some of these docs, but it's hard enough to get my own guy on the phone sometimes. Anyone know the magic words to say on making that first phone contact? I find that most doctors will say they've treated CHers before, so I need to be asking better questions.

Also, a question for anyone: if you have a neuro who's out of town or far away from you, do you find that they're willing to work with your local GP in terms of getting meds and tests?

Title: Re: Failing my prevents... ideas welcome.
Post by wimsey1 on Jun 14th, 2012 at 10:16am
Mine will, up to a point. I have found doctors do not necessarily trust the tests and results of other docs, and frequently will want procedures done at their own hospital of choice. So I guess it sorta depends. Nice to be able to stand on shifting sand, huh? blessings. lance

Title: Re: Failing my prevents... ideas welcome.
Post by Akina on Jun 14th, 2012 at 11:56am
Hubby and I are always open to meeting another "head-banger"(lol)!  Only issue is that past September, we won't be in the area anymore.  Hubby is a service member and we have orders taking us to CA in the fall.

About the OUCH list: If our experience is anything to go by, every one of the doctors listed is a good doctor.  Dr Finkel was more than open to whatever we wanted to try, and told us if we found any article or scientific paper we wanted to bring him, go right ahead.  He would read it, tell us if it's good science/bad science, and if it was good science, talk about whether or not it's a method to try.  By far, the most willing person to work with different things/medications than most...oh, and side effects are of a major concern to him. :D


Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 14th, 2012 at 12:47pm
Thanks, Lance. My GP by far is the best doctor I've seen in terms of his ability to listen and consider my opinions. Therefore, I would hope he's the same way with other docs. But I know what you're talking about--I dated an ER doctor for many years.  ::)

Akina, I surely hope I'd be able to see the neuro before September! So as soon as I make an appointment, I'll drop you a line. And I may as well start with this Dr. Finkel of yours, because he already sounds way better than my fired neuro. Ugh.

Title: Re: Failing my prevents... ideas welcome.
Post by lydia nichole on Jun 21st, 2012 at 4:34pm
Hey i live in VA and i go to a headache specialist and he is amazing i am a chronic CH'r

The Neurology & Headache Treatment Center

4660 Kenmore Ave Ste 900
Alexandria, VA

I know your in richmond and i know this is far but this guy spent over an hour with me listening to me and my symptoms. Read his reviews pretty much all 5 starts his Name is Dr. Stuart Stark they will load you up with samples. A long wait about 30 mins but worth it!


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Title: Re: Failing my prevents... ideas welcome.
Post by AppleNutClusters on Jun 21st, 2012 at 9:14pm
I'm willing to travel, Lydia. And it's most important that after 10 years of CH, that I have a doctor who will have time to listen. Thanks for the lead... I'll check him out!

Title: Re: Failing my prevents... ideas welcome.
Post by Batch on Jun 22nd, 2012 at 2:01am
ANC,

Looking for a great neurologist who will listen to you and work with you to come up with a standards of care treatment for your CH problems is a life-long endeavor... 

Any dyed in the wool Mac user should know you'll get better than even money odds working with an Integrative or Holistic physician who understands a vitamin D3 deficiency and how to treat it effectively...  They're also a lot easier to see than a neurologist to boot...

Take care,

V/R, Batch

Title: Re: Failing my prevents... ideas welcome.
Post by lydia nichole on Jun 22nd, 2012 at 10:12am
He is great. He put me on Topamax (because i have Low BP, Supposedly, i beg to differ) and Prednisone for preventatives and Relpax, Zomig (Nasal & pill) form, and Sumavel DosePro to abort i have had CH since i was 11 and have them chronic 15-20 days a month now i am about 5-8 days a month and they only get to a kip 4-6 only one kip 9 in the last month and a half so i have only used the Sumavel once. but so far his plan is making a difference for me. being before him i was going to the hospital atleast twice a month with kip 10 CH because they would last for at least 3hrs exactly go away for an hour then comeback for another 3 hours. pure hell ! But anyways ! he is a really nice guy and all his reviews are great.

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