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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Double bonus-Clusters & Migraines
        
(Message started by: lionsound on Aug 2^nd, 2004, 4:37pm)

Title: Double bonus-Clusters & Migraines
Post by lionsound on Aug 2^nd, 2004, 4:37pm

hello.
I've been lurking around here for months and have finally decided to post. I get clusters and migraines. I don't know if I'm episodic or chronic CH because I get both kinds going and they bounce and reflect all over each other inside my head. I have had them separately so I know they are very different. I was first diagnosed with CH in sept of 93 when I went to the ER. Eye shut, nose dripping, writhing around in pain...incredibly unattractive. I have a very high pain tolerance from the migraines, but i knew this was different. The thing that cinched the cluster diagnosis was when I wanted to rip out the newbie doc's throat for offering me a tylenol. Two days later my neuro put me on verapamil.

I HAD a great neuro until two months ago. He eveporated into thin air I swear. He left the practice he was at and as he disappeared....so did my care. Sucks big time. Since then I've been floundering around to find a new neuro without much success. Finally I caught a break. The NECH had a cancellation on August 16th. Far from me, but I do have family near there.

I've had a really rough time the past few weeks and the lack of neuro doesn't help. The worst was a Kip 10 which I startled awake to while in a terrifying nightmare.

Lets see...meds I've been on..
effexor, zoloft
trazadone, ambien
zanaflex, nortrip

things I'm on now
keppra, gabitril, verapamil

assorted abortive sundries...
imitrex, zomig, frova, relpax,
stadol(insread of ER)

other misc stuff, just for extra bonus fun:
PTSD, nightnares, no sleep

The three things that save me: my husband, my two sons

(Speaking of which.. I have to go pick them up now)
Thanks for listening.
-L

Title: Re: Double bonus-Clusters & Migraines
Post by floridian on Aug 2^nd, 2004, 4:51pm

I've had aura without migraine for a long time. Recent headaches seem like migraine. My clusters always seem to be quite distinct and occur at different times.

Have you tried magnesium, B-vitamins, and CoQ10? Magnesium works for both migraine and clusters. CoQ10 has been researched for migraines (preliminary work only - no double blind studies), but not for clusters yet. These are not quick acting approaches, but they are unlikely to interfere with other medicines.

Melatonin may help with both your clusters and lack of sleep. My sleep gets messed up a few weeks before the clusters start, and only gets worse with 'alarm clock' headaches cause the beast keeps setting the clock to ring earlier and earlier.

Have you tried oxygen to abort the clusters? It won't stop them from coming, but often blocks the pain and shuts off an individual cluster headache.

5-htp is another thing to consider, but be careful before using that. If you have been on anti-depressants, you need to clear them from your system before 5-htp.

Quote:

J Am Acad Nurse Pract. 2004 Jun;16(6):251-6.

Evidenced-based use of botanicals, minerals, and vitamins in the prophylactic treatment of migraines.

Rios J, Passe MM.

University of Texas at Austin School of Nursing, USA. janie_rios01@yahoo.com

PURPOSE: To analyze evidence-based information about alternative prophylactic pharmacological migraine treatments utilizing feverfew, butter-bur, magnesium, and riboflavin and to discuss the mechanism of action, dosage recommendations, side effects, and contraindications for each treatment. DATA SOURCES: Data obtained via electronic databases and professional medical references. CONCLUSIONS: Current clinical data support the use of fever-few, butterbur, magnesium, and riboflavin in migraine prophylaxis; however, studies are limited but promising regarding the participants' perceived relief. Studies with rigorous methodologies and larger sample sizes are needed to further support the safe and effective use of these treatments. IMPLICATIONS FOR PRACTICE: With increased patient access to information regarding alternative migraine treatments, nurse practitioners (NPs) and other health care providers must be knowledgeable about evidence-based data regarding these alternative treatments to appropriately offer safe patient care.

Quote:

Cephalalgia. 2002 Mar;22(2):137-41.

Open label trial of coenzyme Q10 as a migraine preventive.

Rozen TD, Oshinsky ML, Gebeline CA, Bradley KC, Young WB, Shechter AL, Silberstein SD.

Jefferson Headache Center/Thomas Jefferson University, Philadelphia, Pennsylvania, USA. RozenT@ccf.org

The objective was to assess the efficacy of coenzyme Q10 as a preventive treatment for migraine headaches. Thirty-two patients (26 women, 6 men) with a history of episodic migraine with or without aura were treated with coenzyme Q10 at a dose of 150 mg per day. Thirty-one of 32 patients completed the study; 61.3% of patients had a greater than 50% reduction in number of days with migraine headache. The average number of days with migraine during the baseline period was 7.34 and this decreased to 2.95 after 3 months of therapy, which was a statistically significant response (P < 0.0001). Mean reduction in migraine frequency after 1 month of treatment was 13.1% and this increased to 55.3% by the end of 3 months. Mean migraine attack frequency was 4.85 during the baseline period and this decreased to 2.81 attacks by the end of the study period, which was a statistically significant response (P < 0.001). There were no side-effects noted with coenzyme Q10. From this open label investigation coenzyme Q10 appears to be a good migraine preventive. Placebo-controlled trials are now necessary to determine the true efficacy of coenzyme Q10 in migraine prevention.

Title: Re: Double bonus-Clusters & Migraines
Post by Superpain on Aug 2^nd, 2004, 5:33pm

On the bright side, I bet those migraines don't seem quite as bad anymore...
Good luck!

Title: Re: Double bonus-Clusters & Migraines
Post by IndianaJohn on Aug 2^nd, 2004, 8:18pm

Oh My God Lion!

I couldn't imagine having both. I used to get migraines when I was a teen, but haven't had them since my mid 20's. Then at 28 got the CH's. I'll be 40 this year.

Keep trying to find that neuro in the haystack. Or at the very least a GP that will work with you. Mine does and it makes a world of difference.

I know that without my wife and kids it would have been MUCH harder fro me. They keep me going.

Best of luck to you,

John

Title: Re: Double bonus-Clusters & Migraines
Post by lionsound on Aug 2^nd, 2004, 11:44pm

Thanks so much for the well wishes!

And Floridian, thank you for the info. Sorry you have them both too. I will look into the melatonin tomorow and the others too. It really helps to get these suggestions from a fellow sufferer. It makes me less chicken to try them. Usually any slight change in diet, vitamins, meds, whatever causes huge ripples that = head pain. Sometimes that fear is overwhelming.

What is 5-htp?
I'm not sure if the gabitril I take is an anti-depresssant or not. I know it's not an SSRI. Off-hand I can't remember what class it's in. It's supposed to help with my sleep. It's not helping. It makes me falling over drunk, but I still wake up every night at 2 and 4am. A month ago it was 3am. Your mention of your messed up sleep make me wonder if my sleep disruption is a cluster sign. I'll have to pay more attention to that.

I had oxygen once, in the hospital, and it didn't work because at that point I was beyond help. I'll ask about it when I meet the new doc in a few weeks. The last neuro doc I tried didn't believe me when I told him I had clusters. he said the symptoms were so specific, he didn't think I had them. I said, "specifically... I know what they are...." and described one of mine to him. He still didn't believe me. I've given up asking him for anything. I think I can hold out these last two weeks.

Sorry to ramble.You all have been a huge help.
May you be well.
-L

Title: Re: Double bonus-Clusters & Migraines
Post by miapet on Aug 3^rd, 2004, 1:55am

On the o2 . . .it needs to be at a high level (about 15lpm) with a non-rebreather mask (if you can't get a non-rebreather, the regular mask can be used, just don't let them give you canulas, you can't get enough o2 . . .
I'm not the queen of posting reports to substantiate (like Floridian *g*), but I did read somewhere . . .that if you take magnesium, you also need calcium .. .somehow the mag interferes with it . . .Floridian, is that right??
Sorry you have both h/as .. ..the o2 helped my migraines too . . so maybe it will yours too *smiles*
*positive light and energy*
miapet

Title: Re: Double bonus-Clusters & Migraines
Post by UN_SOLVED on Aug 3^rd, 2004, 2:03am

Welcome to the board L .

Sorry to hear about your situation.

The nightmares you mention may be caused by Keppra. After I 'complained' to my neuro about this drug and the nightmares I had while on it ... he said I 'wasn't the only one to have those side effects'.
See this --> http://www.healthsquare.com/newrx/kep1561.htm
"Especially during the first few weeks of treatment, Keppra sometimes triggers psychological problems, including psychosis, hallucinations, aggression, agitation, anger, hostility, irritability, anxiety, apathy, emotional instability, depression, and attempted suicide"

Goodluck

Read up. There's lots of info. Feel free to share your experiences and ask questions

Unsolved

Title: Re: Double bonus-Clusters & Migraines
Post by floridian on Aug 3^rd, 2004, 10:35am

Quote:

but I did read somewhere . . .that if you take magnesium, you also need calcium

Both are essential. In the normal population, they often recommed taking calcium with magnesium (usually 2 milligrams calcium for every milligram magnesium). In clusters and migraines, there is too much calcium relative to magnesium. Some of the cluster meds (verapamil) are calcium channel blockers, and magnesium also has some calcium channel blocking activity (although it does lots of other things in the body). Magnesium may increase the effectiveness of verapamil (to the point of lowering blood pressure too much) - the reference below seems specific to pregnant women, but others could be affected.

Quote:

Blood Pressure Medications, Calcium Channel Blockers
Magnesium may increase the likelihood of negative side effects (such as dizziness, nausea, and fluid retention) from calcium channel blockers (particularly nifedipine) in pregnant women. Other calcium channel blockers include amlodipine, diltiazem, felodipine, and verapamil.
http://www.healthandage.com/html/res/com/ConsSupplements/Interactions/Magnesiumcs.html

5-htp is a form of the amino acid tryptophan. It is one step away from the neurotransmitter serotonin. It also passes across the blood-brain barrier better than tryptophan. Taking 5-htp with any medicine that raises serotonin could lead to side effects - including SSRIs, MAOIs, including tricyclic antidepressants.

Keppra doesn't fall into any well defined class of medicines so interactions are hard to predict - "The precise mechanism(s) by which levetiracetam exerts its antiepileptic effect is unknown and does not appear to derive from any interaction with known mechanisms involved in inhibitory and excitatory neurotransmission."

Lionsound - Un_Solved's advice to read up is definitely in order. Also work with your doc.

Title: Re: Double bonus-Clusters & Migraines
Post by pubgirl on Aug 3^rd, 2004, 11:17am

Hello Lionsound

There are quite a few of us here that get both, and sometimes when in cycle it is hard to work out what is going on.
For what it's worth, I don't bother trying any more, I just hit it with 02 and it works for both. If 02 fails, which is does occasionally, I then use Imigran(trex) which is a Ch and migraine drug anyway.

Hope this helps

Wendy

Title: Re: Double bonus-Clusters & Migraines
Post by lionsound on Aug 3^rd, 2004, 12:27pm

I am definitely going to do some reading today. Taking notes and digesting info as I read your posts.

Your collective knowlwdge is amazing.
And Wendy,nice to know that the o2 could work all the way around.

Keppra is such a quirky med, interactions are unpredictable. My PCP and my shrink won't go anywhere near prescribing anything for me with out consulting my (former)neuro. I don't even take imitrex too close to it because my body goes neuro-nutty. yet another reason for the o2, I suppose.

Gabitril is pretty much in the same ambiguous spot. What a mess I've gotten myself into.

Time to dig out. I can do this. You all are helping a lot.

Thanks! PFDs for all.
-loinsound

Title: Re: Double bonus-Clusters & Migraines
Post by pubgirl on Aug 3^rd, 2004, 1:25pm

quick add-on. Make sure you have the right flow rate 02 and the right mask, and also that your triptan is either a nasal or injectible form

Wendy

Title: Re: Double bonus-Clusters & Migraines
Post by lionsound on Aug 3^rd, 2004, 5:20pm

So glad you mentioned that. Right now I only take triptan pills..usually 100mg imitrex every two hours...which don't work quick enough or much at all anymore. I'll be sure to ask about the NS first, then injections. I really hate needles, REALLY hate them. My kids have to hold my hand when I have a shot or blood drawn. Maybe I could learn to love what works. Did I say I hate needles?

-Loinsound

Title: Re: Double bonus-Clusters & Migraines
Post by CarrieBethRN on Aug 3^rd, 2004, 5:33pm

Yeah it's always a double bonus, but you're definately not alone, and I'm glad you are finding this site helpful!!

On January 17, 2001 at 9am, I got a migraine which I still have. I got clusters last fall. Some days, it is like my worst nightmare come true, but we do what we have to and we get by!! :)

I've never had a med work for the chronic migraine before, but we are trying a few different things to try to combat the clusters. Pretty much the meds I'm on now are really to attack the clusters and get them to stop first and foremost, but it's a rough road!

This is a good place to be (if ya gotta have clusters!)

Carrie