Hi there. My husband has had cluster headaches for a few years now, probably much longer. He's had terrible headaches since he was a teenager, but only learned the term cluster headaches four years ago.  We live in Florida, and he describes his season as hurricane season, because they generally start in August and last until October or November.  He is now going into his fourth week of episodes and they are getting worse each time. They used to only hit at night, but they are now coming in daytime. He had one last night from 1:30am to 3am and then another this morning at 10:30am to 11:30am.  We are finally going to the neurologist this Friday.  He was given Imitrex tablets by a GP, but his insurance only allowed 9 a month! Like that did any good, and the pills really weren't effective for him anyways. We have read the information on Oxygen and we are really hoping the neurologist will prescribe it for him. From what I have learned so far is that most sufferers use oxygen and also an oral pill such as lithium or another medicine as well. Does anyone know if we should hope to get two prescriptions while we are there or should we just focus on getting oxygen? What do we do if the neurologists doesn't prescribe anything and just wants to run tests? My husband is afraid of the next six days because now we are only relying on OTC medicines, and now I am worried he will end up with an ulcer because of all that he is taking. I long for his remission months, because as all of you supporters know so well, it is the worst feeling to know your loved one is in such terrible pain and you cannot do anything to help. Does anyone know of anything else we can do while we are waiting for the neuro? Any specific foods to eat or avoid, any OTCs that seem to provide quicker relief?  Any help is appreciated. This site is a blessing as it is a relief to know that other people understand what he is going through.

Hello

Right now, since you dont have the oxygen yet, or any Imitrex injections or any real abortives as of yet...
for the next six days
i say you should start immediately on the water treatment.
No alcohol and no cigarettes (at least for now).

Hopefully the neuro will get you started on something like
Verapamil and/or Lithium
Oxygen
Sumatriptan Generics.....for those emergencies or out in public ;)

Here is a list of herbals/supplements that may give some relief over the next few days.  Keep in mind they will not be nearly as affective as actual prescription medication and abortives.

Taurine - found in energy drinks (stay away from high acidity energy drinks if he has ulcer issues)such as redbull **there are others.     Combined with Caffeine/coffee works.  You can also find taurine supplements at GNC or buy it off the internet, however if you use the internet you will be waiting for at least a week to even get  your shipment.

Kava - Herbal also found at GNC

Cetrizine/Zyrtec = over the counter allergy medication, taken before bed by about 1 hour it may help him get through the night with no hits and some decent zzz's. Found in most any grocery, drug, or walmart store.

The above are items I use.

Others here also use...

Melatonin : take 1 hour before bed- GNC

Fever Few: herbal - GNC

Magnesium - GNC

Dosages on all may have to be played with but the combination I use works for me.

Hot or cold wet clothes to the head during an attack- depends on sufferers preference.

My prayers are with you both over the next few days.

I hope this helps~

Thank you both for replying and for that information.  I am somewhat confused though because I read when suffering from clusters to avoid any caffeine, specifically coffee was listed.  I know everyone says things work differently for each person, but would caffeine cause an adverse reaction and bring a cluster on?

In many of us caffeine + Taurine helps to kill a CH attack when it's happening.

Caffeine does not cause me to have a CH attack, I can not speak for anyone else here, but you can tell from reading different posts that many do use caffiene + taurine to kill a CH attack.

I drink about 4 large cups of coffee every day and take a taurine supplement, since taking the supplements my attacks per day / per week have diminished.  No cure mind you but hey the fewer CH hits the better.

Everyone is different so he will have to use trial and error to see what works for him best.

OK so we went to the neuro. He didn't prescribe oxygen. He said that we could look into it, but that logically it is dificult to obtain a tank. He did seem to know his stuff though. He did prescribe the following: prednisone for ten days to abort the cluster period, verpamil(spelling?) that would hopefully keep the clusters away, and imitrex shots (6).  I'm curious as to whether these have worked for cluster sufferers so please give me feedback if you know anything. Thanks so much. Also- the energy drinks with taurine, oats, and melatonin combinations have decreased the attack pain, though not the number.

The approach looks good with the prednisone to block the attacks while the verapamil takes effect. It works for some, not others. At the end of the pred, if the CH breaks through, push again for the O2. All he has to do is prescribe and make sure you are getting the higher flow. Then you take the prescription to the medical supply store in your area to fill it. You can probably save time by looking for one in your yellow pages and calling them to see if there is anything specific they require on the prescription. My husband gets his O2 (delivered even) from Apria.

Do a Google search on Verapamil and Taurine. If he's taking verapamil, he will want to severely restrict his intake of taurine. Can cause the ticker some electrical problems. And you don't want that.

Neither does he.

Brew,
Thanks for that info because we would not have known. I did google the effects of taking the two and only saw something on a study done with rats but it didn't make much sense to me. If you have a moment, can you go more in depth into this? The only reason I ask is because taurine is really helping, and we don't know if the Verpamil is going to do the job. Of course I don't want any problems with his heart, and neither does he. So we will take your advice but I just was curious as to what you knew.  Thanks so much.

Verapamil SR is better for me at least than the regular verapamil and Imitrex works wonders to kill a hit.

Sounds like your doc has a fairly good handle on things with exception to the balking at the oxygen, some DR's do, mine balked and still does.   >:(   
So I go around him and get my oxygen else where, such as a welding co. or there are more expensive smaller containers of oxygen you can buy without a prescription.  They usually only last for a hit or two but when in need you do what you gotta do.

DP80 wrote on Sep 4^th, 2009 at 5:15pm:

Brew, Thanks for that info because we would not have known. I did google the effects of taking the two and only saw something on a study done with rats but it didn't make much sense to me. If you have a moment, can you go more in depth into this? The only reason I ask is because taurine is really helping, and we don't know if the Verpamil is going to do the job. Of course I don't want any problems with his heart, and neither does he. So we will take your advice but I just was curious as to what you knew.  Thanks so much.

Sorry, I don't know any more than that. I didn't start using energy drinks until after I stopped using verapamil, so it was kind of by mistake.

It's my understanding that taurine has the same type of calcium channel blocking effect as verapamil does, and taking them together doesn't just double the effect - it can increase it exponentially.

Again, sorry I can't be of more help. I'd say talk to your doc.

I am a supporter and want to throw something "out there" for other supporters that isn't discussed very often (and when it is, it's usually in jest and somewhat "snickeringly") 

Verapamil (and other calcium channel blockers) can play hell with the sexual side of your relationship.  While in high cycle, sex may be the last thing on his mind but when the cycle tapers, it may be the medicine that causes problems rather than unwillingness . . . .

If you and he are at the end of your rope with a cycle and verapamil works for him, then hurray! I just want you to be aware of a potential side effect that isn't often mentioned.  There are trade offs in every medication choice and this is one only you and he can make together.  It can affect you both.

Now I'm going to go back to lurking (and maybe I can stop blushing ;).)

Mosaicwench wrote on Sep 4^th, 2009 at 10:32pm:

I am a supporter and want to throw something "out there" for other supporters that isn't discussed very often (and when it is, it's usually in jest and somewhat "snickeringly")  Verapamil (and other calcium channel blockers) can play hell with the sexual side of your relationship.  While in high cycle, sex may be the last thing on his mind but when the cycle tapers, it may be the medicine that causes problems rather than unwillingness . . . . If you and he are at the end of your rope with a cycle and verapamil works for him, then hurray! I just want you to be aware of a potential side effect that isn't often mentioned.  There are trade offs in every medication choice and this is one only you and he can make together.  It can affect you both. Now I'm going to go back to lurking (and maybe I can stop blushing ;).)

Thanks for that information. However, there isn't anything about his cluster headaches that I feel we don't go through together. I definitely don't feel the physical pain he goes through, but I feel the pain of seeing what it does to him. That being said, if verapamil works and decreases his pain, I'm extremely happy. I can deal with the rest.

DP80 wrote on Sep 4^th, 2009 at 11:13pm:

Thanks for that information. However, there isn't anything about his cluster headaches that I feel we don't go through together. I definitely don't feel the physical pain he goes through, but I feel the pain of seeing what it does to him. That being said, if verapamil works and decreases his pain, I'm extremely happy. I can deal with the rest.

I believe knowledge is power, and forewarned is forearmed.

Glad to hear you'll stick around for the long haul.  You sound like an excellent supporter.  Good for you. :)

Brew wrote on Sep 4^th, 2009 at 4:44pm:

Do a Google search on Verapamil and Taurine. If he's taking verapamil, he will want to severely restrict his intake of taurine. Can cause the ticker some electrical problems. And you don't want that. Neither does he.

The following link maybe of interest to you...

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

From this it sounds like taurine and verapamil may work well together if used carefully and in monitored dosages.

Just playing START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE advocate. 

JustNotRight wrote on Sep 5^th, 2009 at 11:40am:

Brew wrote on Sep 4th, 2009 at 4:44pm: Do a Google search on Verapamil and Taurine. If he's taking verapamil, he will want to severely restrict his intake of taurine. Can cause the ticker some electrical problems. And you don't want that. Neither does he. The following link maybe of interest to you... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE From this it sounds like taurine and verapamil may work well together if used carefully and in monitored dosages. Just playing START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE advocate.

The first URL is mostly medical gobbledegook to me. I'm sure it makes sense to some, but not me.

The second is a dead link.

All I know is this - I've read in several places that a patient should be careful when taking verapamil and taurine together. I've done it. And I know that those few times when I've had several energy drinks in one day while taking verapamil, I've experienced slight heart palpatations. Therefore, I don't do that anymore.

End of story for me. You do as you wish.

He has stopped drinking anything with taurine while taking his meds. Neither one of us want to take a chance. Last night he started his meds and thankfully he slept through the night! I hope that is a sign that these meds with work for him. Thanks everyone for your support and information. It has made a world of difference for us.

Glad we could help. 

Sleeping through the night is such an important step.  It's almost seems that if a sufferer can sleep through, they can handle almost anything the day throws at them (in my experience).

Stick around and update us on your successes (and share your failures, too - we'll listen to it all!) ;)

  It's almost seems that if a sufferer can sleep through, they can handle almost anything the day throws at them (in my experience).

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Oh absolutely! I swear, when I start getting sleep during a cycle it seems like it gives me more positive fuel and I end up getting hit less all day. Ah, the power of sleep. ;)

PF times!

Very nice to meet you, DP.  Follow-up with the neuro on O2. Some people have success with generators but most people use tanks.

I hope your guy is doing well.

Charlotte

First of all...sorry to see you here DP,
On the upside, we all empathise with you.  As an aside, my cycle started approx 5 weeks ago. My MD prescribed Prednisone on a taper over 2 weeks followed by Verapamil daily.  I encourage you to print off as much information from this site as you can to persuade your Doc to come to the party with the O2.  Dont let him give you excuses, or find another Doc.  The Verapamil seem to have finally taken effect as I have been able to sleep through the night for the last week with only minor "shadows" during the day.  I have an O2 tank on standby as this is the only thing that will abort a full blown attack within 10 min.
Would be interested to see how you go.

Best of luck to you   :)