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RyanD

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Clemson/Fort Mill, SC
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Nov 27^th, 2009 at 2:12am

My name is Ryan and I have had cluster headaches for almost 9 years now. I got my first headache at 14. Originally the doctors just believed that I had a sinus infection since the headaches occurred during the spring and fall of every year. After a few years of this I just dealt with it the best I could because I believed I wasn't man enough to deal with the pain alone. One day while home from college freshman year i had an attack that unbearable. My brother found me in my room screaming. That is when my parents finally decided to take me to the emergency room. It was there that i found out what Cluster Headaches were. I went to the neurologist the next week and was diagnosed with CHs. He started me on a Verapamil regimen.

This seemed to work for a couple of years with only sporadic headaches here and there but compared to before the medication, it was like a blessing from God. However this semester the cluster headaches returned with a vengeance.

The headaches would wake me up in the morning and continue throughout most of the day off and on. I was having between 5-7 a day with most lasting 2 or more hours. The day before i was supposed to go home for fall break i had the worst headache that i can remember. The headache lasted for almost 10 hours. At that point I made an appointment with my doctor and he started me on different medications. None of them have worked so far and I am still having 1-2 a day and i am nearing the end of the cluster period.

I have had to drop out of college for the semester because it is impossible to take a test in that kind of pain. I feel bad for my roommate who has had to watch my life slowly spiral downward and constantly has to deal with my asking for death. Thanks for listening

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LeLimey

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Reply #1 - Nov 27^th, 2009 at 4:10am

Okay Ryan - we are going to get you sorted and the sooner the better. I can't stand the thought that it's had so much of your life and spirit so far.
Now we fight back.
I'm going to write a MUCH longer post than this but I wanted you to know that too. You haven't had a speedy response because of the holidays and everyone being away from the PC but just you watch now! You've found yourself an army honeybun and we're ready to go to war on your behalf!

Now hold on for a few minutes because I'm going to be right back

Helen

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LeLimey

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Reply #2 - Nov 27^th, 2009 at 4:27am

Okay Ryan- I'm going to ask a ton of questions, forgive me for that but it is so we can help I promise!

Where are you now? SC or "home" and if home, where is that?

Are you seeing a neuro now? I'd like to be able to recommend a good one in your area if possible too.

What meds have you tried so far? What has helped or hasn't?

When on verap, what dose?

Have you ever had the dose increased? Sometimes that helps significantly.

Have you ever tried a prednisone taper?

Have you tried Oxygen?

What abortives such as triptans (imitrex as an example) have you tried?

Once we have the answer's to these (and even more!) we can help significantly. I don't want to overwhelm you with a pile of stuff that will be useless to you right now. If I suggest stuff you've tried that hasn't helped, I'll only demoralise you. I won't let that happen.

CH is the ultimate designer headache. No two of us have all the same autonomic symptoms, the same duration of attack, the same triggers, effective meds - nothing. We're all one-of-a-kind which makes it very hard to treat as we all have to have our own special cocktail/arsenal to be effective.
The good news is we WILL get you there! No one EVER copes alone after we get our hands on them LOL We're worse than the Borg I'm telling you! Wink

Have you ever tried using ice packs or heat? I personally love ice packs, one on the bag of my neck and one on the cranky side of my head. Others find hot showers really helpful but "hot and humid" is a big trigger for me.

Strong Coffee and Red Bull! Actually the much cheaper generic energy drinks but "Red Bull" lets you know exactly what I mean. Caffeine is a vaso constrictor and since CH is a vaso dilatory headache, vaso constrictors are the only thing that will take away the pain. If you feel the "shadowing" - the attack building - chugging strong coffee or energy drinks can really help. I always have cans with me in the car or my bag and I single handedly support the Costa Rican government I think! It really helps though. The trick is taking them early enough as, with ANYTHING we use, if you go past the optimum point for taking them - sadly, they are much less likely to help and at best, you'll suffer a lot longer than you need to.

Don't ever be a "hero" with CH. Don't ride it out. WHY?? It's taking your life away, don't give it a minute longer than you absolutely have to. This is your life to enjoy, it's not CH's life to wreck. Don't make me come after you now!! LOL

Okay thats enough interrogation and bossing about from me for now. I will be keeping an eye out for you (God help you!) and so will everyone else here.

You've got a whole new family now - welcome!

Helen

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bejeeber

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Reply #3 - Nov 27^th, 2009 at 10:46am

Oh man, 5-7 a day with most lasting 2 or more hours - that's one severe s**tstorm from hell you've been enduring. Sad

Well you listen to your LeLimey now, and let us know the answers to those questions. There's more to stopping the headaches than preventatives such as verapamil ya know, and when LeLimey asks whether you've tried O2, imitrex, etc., it's because those are some very effective abortives. I can tell you right now that they have saved me and revolutionized my CH experience, and I'm not alone 'round here - lots of enthusiastic O2 aficionados on this forum.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Iddy CH.com Alumnus Offline Smile Posts: 486 Toronto,Canada Gender:	Re: New Member Reply #4 - Nov 27^th, 2009 at 10:58am Ryan, sorry to hear you are in such bad shape O2 ROCKS! Your in good hands with Helen. All the best.
Back to top	Walk in Peace "If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama IP Logged

RyanD

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Clemson/Fort Mill, SC
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Reply #5 - Nov 28^th, 2009 at 1:39am

right now I am currently on divaproex and a second prednisone taper. I have sumatriptan for when the headaches come on. The doctor doubled my Verapamil prescription but that did not seem to help any. I think the divaproex is helping somewhat. I haven't tried any O2 yet but i think when I go back I may ask about it if the headaches have not stopped.

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Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: New Member Reply #6 - Nov 28^th, 2009 at 1:49am Wow! You have been through a lot! I'm so sorry. Listen to the people here and read all you can on this site. You will get better! Personally, I don't know what else to add to Helen's response. The more you tell us, the more we can give you suggestions...so let it pour! Good luck! Joni
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LeLimey

Ex Member

Re: New Member
Reply #7 - Nov 28^th, 2009 at 4:32am

Divaproex is also called Depakote or Sodium Valproate.
It is an anti seizure drug so whatever you do, don't just "stop" taking it, you will need to taper your dose down under doctors instructions or it can cause the seizures it was designed to prevent. I don't know if you already know that or not but it's always well worth repeating!

Just as an aside with verapamil, you say your doctor doubled your dose? Was that in one go or did you have to gadually increase it? Verapamil is a drug for blood pressure and increasing it needs to be graduated. You should have an ECG on commencement and at every increase too. Some doctors will insist you have one after ten days on it, some don't. I have always been told (by doctors) you should have a second ECG after ten days to check or irregularities. I don't know what dose you were on, some people do seem to get help at as low as 240mg with the majority here being somewhere between 480mg and 760mg however there are quite a few people on 960mg and even over 1000mg a day. I don't know how far you got with it as I said, but I wanted to share this information again, not just for your benefit but for anyone else reading this.

Alot of people read but never post, I want to make sure the information is as good for their needs as yours so forgive me if sometimes you've read my old blather more than once!

You say you're on a second pred taper? Second in how long? I hope it's helping you and that you're pain free on it as you should be, what dose are you going to on the Pred or rather, where are you in the taper? I'm concerned as you saying you have imitrex (injections I hope!) suggests you maybe suffering attacks right now.

It's good to see you posting again, I know I wasn't the only one checking in to see when you did!

Take care
Helen

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Dallas Denny 62

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Semper Fi !!!!

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Reply #8 - Nov 28^th, 2009 at 7:22am

RyanD wrote on Nov 28^th, 2009 at 1:39am:

I haven't tried any O2 yet but i think when I go back I may ask about it if the headaches have not stopped.

Get the O2 even if the cycle seems to be ending so you'll have it available for next cycle!! As others have told you, it has completely changed my outlook on CH. Where a cycle used to be just completely unmanageable ( even with Imitrex ), I consider it now to be a major inconvenience in comparison. Yeah, I still have some pain but very few hits break thru to the levels I experienced before O2 and Imitrex.

Don't know how your folks insurance will look at O2 though, mine thru my wifes work won't cover it for CH but I was able to buy a complete rig ( wheeled cart, E tank, 15 lpm regulator, and a mask) for $150. I then rented 2 xtra tanks for $8/mo and paid $12.50 each time I had them refilled. When the cycle ended a couple weeks ago I returned all the rentals but now have a complete rig with a full tank in the closet to get me started when the beast rears its ugly head again!

Sorry you had the need to find us but since you did, Welcome Home!!

Dallas Denny

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I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!

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RyanD

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Clemson/Fort Mill, SC
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Reply #9 - Nov 28^th, 2009 at 2:54pm

If i remember correctly the Verapamil prescription was for 240 mg. The first prednisone taper was at the beginning of October and lasted only 5 days. The current taper starts at 50 mg a day for 5 days and goes down by 10 mg every 5 days. I don't have any Imitrex injections either.

I haven't had any tests done yet because my schedule was really erratic with college.

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Jrcox

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FARMINGTON, MN
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Reply #10 - Nov 28^th, 2009 at 7:11pm

I too started to get CH when I was 14. Not untill I walked to the emergency room my self when i was 18 when i found out about CH. then diagnosed with them later. I had a cycle like yours two years ago. Literally made me insane. At night its like I turned into a Lycan. Ripping my clothes off screaming, pacing around, crying, more screaming. I would always scream what am I supposed to do. I would lay down, sit up, pace some more, do jumping jacks, then fetal possission. Then do it again in an hour, once I fell asleep. This past cycle was bad but I've had much worse. I was mote prepared though. I am so sorry you had to find us this way. I too did the college thing and would sit in class and just get rocked. People would look at me. And all I could was leave if it got to bad. This website has saved my life. And I am always on. Reading these post from my phone. I reply as often as I get a chance. I am still crying, after reading your post. Because I 100 percent understand what your dealing with. The longest one I got was 11 hours. I eneded up in emergency. Also, the cycle after that 18 months later my wife at the time found me in the bushes unconcious because I had jumped through our living room window. Please forgive my poor grammar as I am typing on my phone. But get o2, don't get complacent. I could've saved my self alot of unnecessary suffering had I been prepared before the cycles started. To Many years I would wait till the last minute to get o2 and trex prednisone etc. I wish you all the best. Please read this site and tell us your successes and struggles. Were all in this together bro.

Hope you get PFDAN

jrcox

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