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A very promising treatment and tips.. (Read 2614 times)
Akash
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A very promising treatment and tips..
Apr 22nd, 2010 at 5:00pm
 
I have seen countless neurologists and have finally found a promising treatment. I'm sure anyone reading this post has taken the usual verapamil, imitrex, ergot, maxalt, etc.. so i won't mention those.

1. A prednisone treatment for approx 2 weeks.
2. Depakote ER (250mg first 5 days then 500mg per day)
3. any recommended beta/calcium blocker (inderal,  verapamil, etc...)

Yes O2 is great and all of the abortives work decently/ok for myself. imitrex injections and nasal sprays work best for me.
   The problem is this..
When I am getting 5-10 clusters a day lasting 45min-180min (avg. 2hrs) I am taking so much imitrex or other abortives that I get rebound clusters. To combat this i had tried to take only imitrex one day maxalt the next then amerge then zomig. Then i tried this treatment with 02 and no matter how I do it, I get reboundsand/or feel very weak to the point where I can't move. God knows what this is doing to my heart and blood pressure.
   Because of these reasons I recommend trying the above Preventative treatment along side with the abortive of your choice. Depakote is an anti-seizure medication but after extensive studies it seems that cluster headaches affect the brain more like seizures than migraines. usually my cycle lasts 8 weeks. It took 3 weeks for the depakote ER to start having an effect, but it is a world better.
   Keep in mind that prednisone is known to have many side effects, mainly swelling of the joints from water retention which will cause you to limp for the duration of prednisone treatment. Talk to your doctor if you get any other side effects from this drug.

   I have been suffering for 7 years now and this is the first year that my clusters have reduced in pain by 90% or more. I would not wish a cluster headache on satan himself. I pray for everyone here that they find the correct treatment. If you have any questions feel free to email me at
               akchopra@ucdavis.edu
I check my e-mail daily and will make it my first priority to respond.
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bonkers
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Re: A very promising treatment and tips..
Reply #1 - Apr 22nd, 2010 at 5:18pm
 
Hi Akash,

So glad you finally found an effective treatment. Hoping that it works for others as well.

Thanks,

Ron
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angela40
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Re: A very promising treatment and tips..
Reply #2 - Apr 22nd, 2010 at 6:35pm
 
Thanks! I had my first neuro appointment earlier this week and she recommended Depakote for me. I will only start it when I have another cycle. I was a little concerned when she mentioned Depakote because I had not seen it discussed much on this forum. She did say I will get oxygen as well.
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kayarr
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Re: A very promising treatment and tips..
Reply #3 - Apr 22nd, 2010 at 7:08pm
 
Glad you found something to reduce your suffering.  Keep us informed.
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Nothing is impossible!  Just believe!!!!!
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wimsey1
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Re: A very promising treatment and tips..
Reply #4 - Apr 23rd, 2010 at 8:29am
 
I too am glad you found relief. I have had CHs for 23 years. I am also glad to hear there is someone else out there who believes these act more like seizures than headaches. I have been saying this to any neuro who will listen. To me, the postictyl effects speak volumes for their etiology. You mentioned medical opinions on this? Smiley
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danielpeterson
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Re: A very promising treatment and tips..
Reply #5 - Apr 28th, 2010 at 10:15am
 
JUST to keep this interesting thread active, I will put in two cents. ALTHO my headaches have morphed all over the place since the first one that resembled clusterheadache in 2006, I  have called what goes on in my right brain, especially my right eye, "spasms" quite a number of times. The doctor --there is only one hard-to-contact neurologist in my entire large Montana region and I have yet to see him-- gave me some traditional anti-spasmotics, like valium, but that didn't work.

The herb, skullcap, seems to work, but only gently. I AM still seeking even a good definition of my condition.LOVE, Daniel R Peterson
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Batch
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Re: A very promising treatment and tips..
Reply #6 - Apr 28th, 2010 at 9:17pm
 
Hey Akash,

Glad to hear you've found a cocktail of preventatives that work for you... 

In analyzing the results of the cluster headache survey many of us took in 2008, the ongoing survey here on CH.com and reading posts on this topic over the last four years, it appears the most important factor in arriving at an effective preventative regimen for your cluster headache attacks is a neurologist who is willing to work with you in finding the magic combination that works... 

It's equally important that your neurologist stays with you when that regimen's effectiveness wanes after time to find another as the beast is crafty in figuring ways around any one method of preventing it's unrelenting torment.

What flow rate are you using with your oxygen therapy and how long have you been using it?  How long do you need to stay on oxygen to abort your attacks?

Re-attacks are common for the first month or two after starting oxygen therapy...  We've defined a re-attack as another cluster headache that occurs between 15 to 45 minutes after a successful abort with oxygen therapy. 

What appears to be happening is that oxygen therapy at higher flow rates is capable of aborting the pain of a cluster headache attack, but not the triggering mechanism if the abort time is short. 

When the effects of hyperoxia (breathing 100% oxygen) and/or respiratory alkalosis (hyperventilating on 100% oxygen) dissipate... and the triggering mechanism is still active... and the cluster headache returns... we call this condition a "re-attack."

We also call them re-attacks as the term "rebound headache" only applies to a condition that arises if a headache medication has been overused to the point where the body develops a resistance to that medication and you need to take increased dosage to achieve a therapeutic result... 

In short, and in order to place oxygen therapy in perspective with other headache medications...  if you had a resistance to oxygen...  you'd be pushing up grass rather than mowing it...

Fortunately, re-attacks are just another cluster headache that are easily aborted with oxygen therapy.  Moreover, the frequency of re-attacks can be lowered by staying on oxygen after the abort by bringing the total oxygen time up to 15 minutes. 

In other words, If it takes 6-7 minutes to abort an attack with oxygen therapy at a flow rate of 25 liters/minute and you are still experiencing re-attacks, lower the flow rate to a range of 9 to 12 liters/minute or what ever feels comfortable after the abort, and breath that flow rate for another 8 to 9 minutes to bring the total oxygen time up to 15 minutes. 

We found the majority of aborts using an oxygen flow rate of 15 liters/minute to abort their attacks took longer than 15 minutes to achieve a pain free state and that when this occurred, the incidence of re-attacks was very low.

It's also been my experience, and that of several other long time CH'ers, that a high frequency of attacks a day can be an indication of a low arterial pH (too much acid).
 
This is frequently a result of diet and at times of the year, allergic or histamine reactions, but it can also occur with other co-morbid medical conditions that lower arterial pH.

When the frequency of my attacks go up in a "high cycle" I start pushing calcium citrate tablets with vitamin D, magnesium and zinc.  I take three to four of these tablets a day along with Omega-3 gel caps and two or three glasses of lemonade.

The calcium citrate tablets and the citric acid in lemonade work as a buffer in the stomach to lower acid levels (elevate arterial pH) and that usually breaks the high cycle and I drop to 3 to 4 attacks a week.  The Omega-3 aids in making calcium more available to the body.

I also cut back on red meat in favor of more cold water fish like wild salmon, halibut, and cod high in Omega-3 as well as a shift to poultry.  I also eat a lot more more green veggies and snack on almonds.  I'm not a vegan, but I'm sure your cardiologist would like to hear you're eating this kind of diet...

The following link provides an explanation of alkaline forming foods that can be eaten to bias arterial pH up to the high end of the 7.35 - 7.45 normal pH range.  From my experience, it only takes a small shift to bring relief from a high cycle. 

Many of these food types also aid in lowering inflammation that can also lead to an increase in the frequency of attacks.

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Note that a food's acid or alkaline-forming tendency in the body has nothing to do with the actual pH of the food itself. For example, lemons are very acidic, however the end-products they produce after digestion and assimilation are very alkaline so lemons are alkaline-forming in the body. Likewise, meat will test alkaline before digestion but it leaves very acidic residue in the body so, like nearly all animal products, meat is very acid-forming.

Take care and hope this helps,

V/R, Batch





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« Last Edit: Apr 28th, 2010 at 9:41pm by Batch »  

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LasVegas
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Re: A very promising treatment and tips..
Reply #7 - Apr 28th, 2010 at 11:30pm
 
Batch, that was an awesome read, thanks for sharing
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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wimsey1
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Re: A very promising treatment and tips..
Reply #8 - Apr 29th, 2010 at 8:32am
 
That was great, Batch. And Akash, keep in mind what Batch had to say about body tolerances. We tend to find a cocktail that works, only to discover some time later it no longer works. This can be maddening unless we have a good neuro who also understands the slippery nature of this beast. Flexibility, and working with whatever you find on this site which might be new but has helped others, is a key to staying pain free. Good luck, and blessings!
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AdoreInVegas
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Re: A very promising treatment and tips..
Reply #9 - Apr 30th, 2010 at 2:38pm
 
Found a similar approach is helping with hubby's CH, and thankfully found a headache specialist who seems to really know what he's doing.

Hubby's on the following:

Verapamil 240 mg three times a day
Depakote 500 mg, two at night

When the beast starts to knock, O2 at 15 liters for 15 minutes (just ordered an Optimask to replace that "thing" the O2 company gave him), repeat in 10 minutes if still there. If all else fails, Imitrex dose (he has one of those Star Trek air injector thingies).

This neurologist's office seems very pro-CH treatment: office waiting room is very softly lit, no music, very quiet, people cannot enter with perfumes or heavy odor and cell phones on vibrate only. If a patient calls in with an intractable CH after all therapies are tried, they call and identify themselves as a "Cluster patient" and will be seen within the hour for in-office treatment. I don't know exactly what that is, but overhearing other patient's it's an in-office injection at the base of the skull - hoping hubby NEVER has to go through that. We have been there when a patient had an in-office injection and they leave happy as clams and seem to be pain-free.

We saw another neurologist previously and in contrast to this new one, he did the right things but at very, very low doses. Hubby's had 2 hospitalizations for IV DHE and after the second stay the treatment no longer worked. That's when we went for the second opinion and found this new one.

I would imagine the key to this is being open & willing to try new things/other doctor's opinions. In this case it paid off.
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