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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> How long do you try meds before giving up?
        
(Message started by: Garys_Girl on Sep 23^rd, 2007, 6:05pm)

Title: How long do you try meds before giving up?
Post by Garys_Girl on Sep 23^rd, 2007, 6:05pm

For those meds you have tried that failed to help your CH, how long did you take them and what dosage levels did you get up to?

Hubby gave Imitrex injections four tries.

He gave Depakote a month, got up to 500mg at night. It just made Gary really sick. We don't know how much of the med actually got into his system because of the chronic vomiting.

The next step was a pred taper into verapamil and topomax. The pred taper provided no relief (was started at 80mg): the neuro took him up to 480mg of verapamil. The topomax was a 50mg dose at night. It seems, though, that many of you are on much higher dosages of verapamil to be effective?

None of this provided any relief. However, again, we don't know how much of the meds actually made it into his system because of the chronic vomiting.

I'm forgetting the nasal spray....

He is now taking amitriptalyn (50mg at night), is about to start Lyrica (75mg twice a day), does take the melatonin (5mg up to 3x per night). But basically, just to get some mind-numbing relief, he's going the opiate route, so at least he doesn't care as much that he's in "I can't take this anymore" kind of pain.

He eventually did the DHE IV drip at the hospital. That made things the worst they've been and turned the chronic vomiting into intensely violent constant vomiting.

He's now officially a-typical chronic clusters non-responsive to drug therapy. But now that things have calmed down with his tummy a little bit (throwing up only 3 - 5 times a day now), I'm wondering if he shouldn't consider trying at least the verapamil again. The Depakote really did a number on his stomach, so we just can't consider that.

Thanks for any input,

Laurie

Title: Re: How long do you try meds before giving up?
Post by Rosybabe on Sep 23^rd, 2007, 7:18pm

Hi Laurie!

I am not a Doctor, but I believe you should try meds at least two weeks for them to start getting in your system. With your Hubby's vomiting problem that makes it very difficult. It does not give time to the body to absorb the med.

Sometimes the Doctor will increase the dose until the point where they start working.

I think, Your hubby needs to find out why his stomach is so sensitive. He may have another condition and needs to be treated for that first. Some of the meds are very harsh on the stomach and if he has it already upset, they will only messed it up even more.

Talk to your Doctor and I really wish you find the right treatment for him.

Thanks for being such a great supporter of your husband!

Wishing you lots and lots of pain free time!

Rosy.

Title: Re: How long do you try meds before giving up?
Post by Jonny on Sep 23^rd, 2007, 7:23pm

You NEVER give up!!!

Title: Re: How long do you try meds before giving up?
Post by AussieBrian on Sep 23^rd, 2007, 8:41pm

You never give up the BATTLE!!!

(Just sometimes you have to give up certain drugs.)

Good luck, G-G, there's plenty of alternatives yet.

Title: Re: How long do you try meds before giving up?
Post by UN solved on Sep 23^rd, 2007, 8:56pm

I'm not going to go as far as to say that he doesn't have clusters, because he may very well have them. But I will say that it is very suprising that Imitrex, DHE, Verapamil, and steroids all failed. The odds of a cluster patient having all those meds fail has to be astronomical. (sorry). Especially the DHE and the steroids, both are regarded as being highly effective in the treatment of CH.

So, I must ask: Are you 100% sure of the diagnosis ??

Whatever the problem is, I hope you find a fix for it soon.

Goodluck

UNsolved

Title: Re: How long do you try meds before giving up?
Post by Garys_Girl on Sep 23^rd, 2007, 10:51pm

He's had GI problems of varying severity for several years. He was diagnosed with "IBS" last year - around the same time that he started having shadows and multiple ch hits every day. (March 2006).

We have seen three GI Docs and he's now with an IBS specialist. He's had three endoscopies in as many years, one gastric emptying study, and two colonoscopies.

We found this site in August of last year, and given his very classic symptoms, we then went back to the neuro circuit. Current diagnosis is clusters. He had a K10 hit out at a dinner that happened to be with several docs in attendance, one who's sister has clusters. They were all gathered around "ooing and awing" at the one dilated pupil. One grabbed him, took him home and administered solumedrol which aborted the attack, but other than O2, that has pretty much been the only thing to provide relief.

The first thing we tried when we found this site was Kudzu. It helped. That led us to believe that alternatives may work. He did try busting in Sep - Jan 2006/2007 and it seemed to help a bit in Oct/Nov, but December things started to go downhill, and since Jan it's been a real beast.

So we headed back to the neuro circuit and started to try the conventional meds. He's seen the best neuros avail up here, including Lawrence Neumann.

He's tried the different drugs, different combos/cocktails - but this GI thing since the hospital stay to bust the cycle didn't work has just pushed him over the edge.

The GI problems were best brought under control by Tincture of Opium. But since that hospital visit, his system hasn't really responded to anything. The latest neuro is giving up, because he's had such trouble keeping most pills down.

That's how we ended up at just someone to address pain management.

It is unusual that he's been in pain since March 2006 and the pain responds to so little.

Having had viral meningitis and having liberally used a known neurologic agent, a chemical banned in the US, used on a farm for three years when he lived in another country without any kind of protective gear, we've been concerned that the problem isn't just clusters.

MRIs have not revealed anything organic. However, this most recent round of MRIs we couldn't complete because the administration of the DHE IV caused such a violent reaction from his GI system, and when the MRI machined tuned, it sent Gary into "seizures" that caused both a K10 and vomiting that caused choking at the same time. He attempted the MRI three times while in the hospital, and they got a good portion of his pituitary gland.

It could simply be that whatever's going on with his GI system doesn't allow for necessary absorption.

But even what's going on with his GI system is unusual, because it doesn't respond to any anti-emetics. At all. No matter when, how, or where administered.

After the hospital stay, he lost just over 30 pounds in six weeks. He couldn't keep water down.

The pain management Doc recommended that we skip Columbia-Pres (in NYC) and head to the Michigan Head-Pain and Neurological Institute, run by Dr. Saper in Ann Arbor.

The problem is figuring out how to get there and making arrangements to have the time to be there.

However, that said, it's the only "headache" institute I've seen that also addresses the problem of chronic vomiting.

So a very long answer, but he exhibits many symptoms of clusters. The problem is they are chronic and non-responsive to drug therapy. Kudzu did help reduce the intensity and frequency of his headache attacks - but it's very hard on his GI system. But that's why we were hopeful the alternative busting route might work. Which it seemed to for a few months. But that may just have been a coincidence, and it just happened to coincide with a low cycle of activity within this living hell.

The 02 used to help. Right now it just makes a raw throat even more sore. It does calm the beast during the worst attacks - but only during the time he's on the 02. And he gets to a point where the beast is more bearable than the sensation of razor blades in his throat.

The worst problem is that some of the meds that may help cause such problems with his GI system.

I know you're all familiar with his cluster pain. Can you imagine adding throwing up very violently 10 - 30 times a day to that?

And your anxiety over sleep? Over being away from your oxygen? Add to that anxiety over eating anything. Anxiety over just taking a sip of water. Your tongue and throat being eaten away by acid.

I understand his fear of trying these drugs again. Most of them made his nausea and vomiting worse.

I guess I was wondering mostly about the verapamil. What dosages are working and how long did it take you to ramp up to the dose? And do you take it in combination with any other drugs?

Thanks,

Laurie

Title: Re: How long do you try meds before giving up?
Post by UN solved on Sep 23^rd, 2007, 11:21pm

Comments:

It sounds like there is alot going on. With as many problems as he has going on, there's not alot I can say that may help his condition.

Things I will say:
SoluMedrol will usually not abort an attack, since it takes up to 6 hours for it to get into your system, even if given as an IV push. SoluMedrol is a very strong steroid that is considered as highly effective when treating clusters. This med can often cause stomach problems including moderate to severe heartburn and acid indegestion. It works best when taken as a temporary preventative. It should give a CH patient a day or two of good sleep with no clusters. (Just bring lots of cookies :) ) and o yea, the dose of Solu Medrol should be between 250mg and 500mg. Less than 250mg may not help. More than 500mg probably will help, but will also cause the stomach problems, bloating, and weight gain.

Although I'm sure DHE affects your GI system along with the rest of the body, DHE does not absord through the GI tract alone. It absorbs directly into the bloodstream weather taking it IM, IV, or by nasal sprays. DHE does not limit what vessels will be constricted, as it constricts all of the vessels in the body. Which may also constrict and cause problems with the GI tract.
DHE will cause nauea and vomiting even in the strongest of stomachs, like myself, and should be taken with anti-metics if tolerable.

The 02 and the raw throat ... is he using a 'bubbler' with it ? If not, this may help trendously. (it did for me)

Verapamil theraputic ranges depend on each individual. The doses will vary. 240 -320mg a day ... all the way up to 960mg a day. But beware: Many can't handle such a large dose of Verapamil. Side effects can be severe and life threatening when the BP and heart rate dangerously decreases. It usually takes several weeks of dose adjusting to get to a therapudic level, if possible. One of the most common combos are Verap & Lithium.
btw, Verap never helped me but I couldn't do more than 400mg a day without the risk of death.

I'd definately recommend the docs at MHNI. Dr. Saper and Dr. Rozen are TOP NOTCH in the field. They have a beuatiful inpatient unit at Chelsea Hospital in Chelsea, MI ... about 3o minutes or less from Ann Arbor, MI. I've been there 3 times inpatient. They have a 'bed and breakfast' on the hospital propert for family at about $60 - $80 night. There is also at least 2 small houses on the property for families of patients. These houses are nice, but small and clean. Nightly charges are cheap and about $50 night. Check into those if you go. Reservations will have to be made early to get into the houses on hospital property. white Hall bed n breakfast should also be reserved. Get there and try to get in at the last minute is not a good idea. You'll end up down the street (1 mile or so) at the Holiday Inn Express.

Goodluck & PF Wishes

UNsolved

since he just started with these headaches a little or a year ago, there's still a chance that it's not clusters. Time will definately tell.

Title: Re: How long do you try meds before giving up?
Post by Lotus on Sep 24^th, 2007, 6:17am

Has he seen a psychiatrist ? Chronic intractible vomitting can be a symptom of severe anxiety and is not a physical ailment but psychological ailment.

When all the big guns such as DHE, pred taper and imitrex injections dont work and he has atypical symptoms which are not CH related such as bowel symptoms, one really need to back off and see what else is complicating the picture.

The fact that his intractable vomiting was eased by tincture of opium rang a big red alarm bell to me. Opium is not supposed to ease vomitting, its supposed to cause vomitting as a side effect.

My husband was also considered atypical and he had a very very long cycle lasting more than 8 months. He also didnt respond well to many drugs and had severe anxiety. He developed non CH related symptoms of hysterical blindness. Finally we saw Prof Spira who is the best CH specialist in Sydney. He took one look at my husband, read his medical report and told us that he was not comfortable with this "atypical" diagnosis. Instead of trying more meds, he cut down all of them to the minimum, first as detoxing and secondly so that the side effects from those meds wouldnt cloud the picture further. My husband was then sent to the pain management team and was seen by the psychiatrists and psychologists. Only when the fear of pain itself and other deep seated psychological issues were addressed that he started to respond to CH meds the way he should be.

A couple of months following the detox and psych treatment, his cycle finished. He is now painfree and the hysterical blindness cleared, all by itself.

Please for your husband's sake, get him to a good psychiatrist for review and look into conversion disorder. CH can be severely complicated by anxiety and other psych problems, which if left untreated, will prolong the CH and preventing the meds to work properly.

Take care and painfree wishes.

Annette