Hi.

My name is Glenna and I am a chronic migraine sufferer that has turned into a cluster sufferer. I have had clusters for almost three years. My first year I had two cycles lasting about 6 weeks each. My second year I had about four cycles. This year I am on my 6th. No one understands them that I know and there is just no way to describe the pain so that they can understand!

I have done different meds for migraine prevention, but only Verapimil for the clusters. Obviously, it is not working as a preventative any longer. I can't stand taking prednisone to break up a cycle, but you do what you have to I suppose.

I have just started a new treatment - Trazodone 50 mg - that is supposed to help with sleep, which should help with the clusters, supposedly. I don't know because I can't find anything supporting it. I only know that functioning at work and as a mom is almost impossible when you are in as much head/eye pain as I seem to stay in lately.

Looking forward to reading and hearing that I am not alone and maybe finding hope.

Glenna

Welcome to the board Glenna. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. I saw you mentioned using it to "break a cycle." For a very small percentage of CH'ers, a short steroid burst will abort a cycle, for most it's just a temporary reprieve from attacks.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work. And don't worry about freaking your kids out with the 02 tanks. Before my kids were 12 they could rig a regulator an an E-Tank and get daddy set up with his 02. :)

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

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Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

I have been followed by a neuro for years, but just moved a year ago to TN - new area, new doctors, new allergens that trigger new headaches. I have done the Verapimil but do not tolerate it well as my blood pressure borders low. I do preventaitves like Melatonin, antihystamines, magnesium supplements and tons of caffeine. My cluster cycles average 6 + clusters awake as well as waking through the night. I went to a local yesterday who suggested a sleep aid first - which is also a seratonin med which has always caused migraines in the past. I am ready to try other means, like the O2 therapy as I hate the prednisone!! I have had two kids, a misacarriage, a blown meniscus, kidney stones, and thyroid surgery. There is no pain that matches a cluster! They make you feel crazed - and my mom says that's exactly how I look in the middle of one. Really looking forward to finding out more, trying new things, and being aggressive on my own as Drs don't seem to be for me.

Thanks!!

Glenna wrote on Aug 17^th, 2011 at 10:36am:

...being aggressive on my own as Drs don't seem to be for me.

Hi Glenna,

The above quote from you tells me that you are likely to start finding some much improved relief now!  :)

I'd like to back Guissepi/Joe up on his assertions about high flow flow 100% O2, energy drinks, and the clusterbusters approach.

The O2 is widely used, loved and praised my members here because it works and is non toxic.

Energy drinks are found to be more effective than caffeine alone. It's something about their caffeine/taurine combo. Drink one along with going on the O2 at onset of an attack and you could keep one from coming back for a good while.

There's a specific vitamin D3 regimen that is making quite the stir around here due to reports of some users going into full remission. Here's the orginal topic on it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Clusterbusters. This can be a more effective preventative than any drug. Here's a Newsweek article on clusterbusters that I think makes a good introduction: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Sorry you've been getting hit hard Glenna, but glad to see that you're going to hit back even harder.  :)

Umm, serotnin therapy may not be the best route, and it could make your CHs worse. Ditch the local and go the HA specialist route. As you have already been told there are much better ways that are proven effective to deal with CHs. O2 is at the top of the list. Good luck and God bless. lance

Hi Glenna and welcome aboard. Great advise already, read everything you can on this site. I have found high flow O2 to be my greatest abortive and use it exclusively.... I have tried many of the meds. and gone various routes, try and find what works best for you and find a good neuro as quickly as poss. They can be a great help. I know it's easier said then done... I've been there... we've all been there.

Hello Glenna & Welcome to Clusterville

  What part of Tn are you in?  I'm in Crossville, 125mi E of Nashville, 75 mi W of Knoxville on the Cumberland Plateau.

  First, absolutely get a script for 02 . . . is a miracle abortive for most of us.

  What dosage of Verapamil were you taking?  I had my first PF day (in over a year) a few weeks after coming here and deluging my doc with info off this site . . . when I got to 240 mg (considered to be the minimum effective dosage) . . . got as high as 480 mg, then back to 360 mg maintenance dose which reduced the frequency/intensity of attacks to a level I could easily kill with the 02.

  Have been using water therapy (see "water X 3" . . . link on left) since 5/04 as my only preventative . . . IT IS NOT EASY TO DO.

  Since June, have been getting slammed hard . . . multiple daily/night hits.  02, energy drinks (I like Rock Star orange or lemonade) and ice packs, but hits have been ramping to Kip 8s on far too many occasions.

  Last night no attacks . . . today . . . no attacks.  I've been experimenting with Batch's anti-inflamatory regimen (see "123 Days PF . . ." on the Meds/Therapies board and I think I've gotten the combination down right for me . . . . definitely worth a try and it's all OTC supplements.

  Even better news . . . dumped my old GP and got a new one who is open to CH info, and has no problem prescribing 02 at rates we require. 

  If you're in Nashville, Vanderbilt has a neuro listed on the OUCH "recommended docs) list.

  Keep reading . . . you've found the motherlode of CH info/caring/sharing and the info/advice you receive here comes from folks who truly understand you pain.

   Be Safe,   PFDANs


      Richard

Thanks for all the suggestions thus far!!

I am in Cleveland, about an hour south of Knoxville. I was in much better control in Virginia Beach with no big changes, so I really think allergy and congestion have caused inflammation just enough to keep me in repeated cycles. I am familiar with Crossvile. I grew up in Tennessee and absolutely love it here! Planning to do duckies down the river tomorrow with my siblings and out kids. It is very much home for me and I am thrilled to be back after 19 years!

I only got up to 120 on Verapamil. I'm small and though now have a desk job, very active. There would be days my BP would go as low as 75/55. I feel better off the Verapamil than on because of that.

I'm not sure why no one has ever offered the O2.  I'm struggling a bit with the energy drinks. I'm not much of a soda drinker and they are a lot like soda for me. I like Mountain Dew though, So I am giving Amp a shot. It's sweet, but doable. I prefer good old fashioned water. =)

I have only had 2 cycles that have hit Kip 8's.  I'm thankful for that! It's 9:00 and I am on my second cluster today, but they are very low in intensity, just longer in duration. I had 3 yesterday. I was hoping they were weening off, but today is not a very good indicator of that.

I am familiar with the great docs in Nashville and am definitely willing to look into it. Vanderbilt has tons to offer us here in TN. I am going this evening to get what I need to start the anti-inflammatory regimen. I will look into the water treatment.

I only took the Trazodone for 2 nights. I actually think it slowed the CH a bit, but I could not tolerate the side effects. Plus, it was not good sleep!

So much good advice and I am so grateful!! People who think they understand but have never been through this simply have no clue!!

I did read where some people wonder if there is a link between CH and thyroid. I had half of my thyroid removed 3 years ago and became a CH sufferer afterwards. I'm very curious as to the link there, if there is one.


Glenna

Amp doesn't have near enough taurine.

I'm figuring that out.  :-X

I'll give them to my son and try something stronger. He won't complain.  ;)

  The Rock Star has low carbonation . . . not near as much as a regular "soft" drink. 

  Used to know Cleveland well . . . grew up in Chattanooga, have been in Crossville since 80' . . . only go to Chatt a couple times a year now.

 
  Can report another PF night, with only a small shadow this morning and no hits today, even though I've been out in the heat/humidity more yesterday and today (which has been triggering attacks in a short period of time).  I'm using 20,000 IU D3 (10K in morning, 10K evening) daily, plus 1200 mg fish oil (morning), and calcium citrate w/zinc & magnesium (Citracal Plus) morning and evening. 

  Am also a water freak  . . . looking forward to getting my canoe and flyrod out soon . . . now that the beast seems to be under control.

  Hope you get relief soon.

   Be Safe   PFDANs

     Richard

Glenna the little one gulp energy shots (such as Red Bull and Red Rain, sold at Walgreen's) are known to work and are of course easier for non soda  drinkers.

I live just a stone's throw from Vanderbilt. Here's the thing about them and CH: They suck in the most pathetic way imaginable. At least they did 2 years ago. I never did find a headache specialist in Nashville back then except some criminally negligent idiot who requires episodic CH'ers in crisis to wait months for an appointment. Hopefully things have improved since then.