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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello to all.
        
(Message started by: meljelene on Oct 2^nd, 2004, 6:58pm)

Title: Hello to all.
Post by meljelene on Oct 2^nd, 2004, 6:58pm

I've lurked for years on this site off and on, but I've never posted until now. I'm a young woman of 24 who has had clusters since I was 11. I wasn't correctly diagnosed with them until I was 17. Before that I was accused of being melodramatic by my family, to getting an expensive bite gaurd from a well meaning orthodontist, to being diagnosed with migrane and taking like 10 imitrex pills a day. My family doctor finally referred me to a neurologist in a neighboring city (I live in a very small town.) She said I had clusters a perscribed verapomil. It worked at first. My cycles tended to last around 2 months out of the year. I didn't have them at all during 2003, but they came back this May and havn't gone away yet. I take verapomil ER 360ml every day and I've been popping tylenol #3s like candy. It's like every year the pain evolves and whatever medicine I'm on stops working. Even the painkillers don't work like they used to. I'm constantly doped up and exhausted. It's nearly impossible to go to work or even function. I hate being on drugs, but my doctor is just in general practice and isn't too keen on finding of even discussing different options with me. I'm pretty healthy otherwise, a little underwieght, active, busy. When i'm on the meds I feel like a zombie. I had a really bad attack this morning and was banging my head on the bathroom floor asking my husband to chop my head off. Not what I call a high quality of life. Anyway, I'm tired, frustrated and need to vent so thanks for listening. Mel
How much tylenol can one get away with taking without causing liver damage?

Title: Re: Hello to all.
Post by nani on Oct 2^nd, 2004, 7:17pm

Welcome ... sorry you have to be here. :( Tylenol will not help, most pain meds will not help. You need to see your doctor again and ask for oxygen and imitrex injections (or another triptan). I also use Neurontin. It was the first thing I found that helped with the pain AT ALL. Hang in there.

Title: Re: Hello to all.
Post by Kevin_M on Oct 2^nd, 2004, 7:28pm

Hi Mel,

It seems the verapamil has been used as the preventive, a medication to try and lessen the attacks, but when the attacks occur, there seems to have been no abortive to stop the pain. The tylenol threes are simply a pain medication and not suited for cluster headaches, no narcotic drug is suitable. In fact taking them will prolong the cycle and lead to more and more headaches, which you may be finding out. Hard to believe you have been aborting the attacks with the T3's.
Stopping the T3's will help, first of all, but you need something to stop the pain once it starts, which is oxygen or a triptan. They are the only known effective prescriptions you should be using for the pain.
Reading a bit here about clusters will tell you that the oxygen and triptan are vasocontrictors which relieve the pain by taking the pressure off of the trig(sp) nerve which will transmit the pain signals.
The prolonged and continued use of T3's are going to cause a worse cycle each time. Read about oxygen in the tab to the left and also about imitrex as abortives for the headaches.

Welcome, hope this helps.

Kevin M

Title: Re: Hello to all.
Post by meljelene on Oct 2^nd, 2004, 8:19pm

Thanks for the advice, I appreciate it. I tried talking to my doctor about oxygen and he didn't want to hear it. I have another question. I only take verapomil while I'm in a cluster cycle. Is it something that I should take year round to be effective, or is it appropriate to take it only during cluster time? On a side note, I did the water therapy thing back in May when this cycle started. It worked for about a week then no more luck. I lost 5 lbs. though. :) Mel

Title: Re: Hello to all.
Post by Sean_C on Oct 2^nd, 2004, 8:25pm

Glad you finally surfaced Mel, first thing I would do is tell the doc that you want O2, and an abortive. Why suffer needlessly? Hope you pop out of the cycle soon.

Sean.....................

Title: Re: Hello to all.
Post by EmpressJMB on Oct 2^nd, 2004, 8:25pm

Welcome Mel. So you've been the one lurking? 8) I haven't been here long but can tell you these people know their stuff. Stopping the Lortabs (Tylenol w/ codeine) and Fioranol were the best thing I ever did in regards to CH. They were addictive and just caused more headaches. I've tried o2 in the past but found out here I wasn't doing it right. I didn't have a rebreather mask. I plan to try it again. 3 weeks ago I was where you are but know have found the proper meds. I was given tapering amounts of prednisone, verapamil and Imitrex. You should go back to the neurologist and tell them you need help. Go with as much information as you can bear to read. I'm so sorry your in pain but welcome to the site. Janet

Title: Re: Hello to all.
Post by Kevin_M on Oct 2^nd, 2004, 11:55pm

on 10/02/04 at 20:19:08, meljelene wrote:

I tried talking to my doctor about oxygen and he didn't want to hear it.

Yep, same as my doc who scribed me the trex. Laughed at oxygen. So... I kept him for the trex and went to another doc who prescribed the O₂ Get a doc that will prescribe one or the other or both.

Kevin M

Title: Re: Hello to all.
Post by BobG on Oct 3^rd, 2004, 11:31am

on 10/02/04 at 20:25:41, EmpressJMB wrote:

I didn't have a rebreather mask. I plan to try it again.

That should say NON-rebreather mask. ;)

Title: Re: Hello to all.
Post by Ronny on Oct 3^rd, 2004, 1:08pm

on 10/02/04 at 20:19:08, meljelene wrote:

Is it something that I should take year round to be effective

Hi,

Verapamil is to be taken during the cluster episode and my doc told me to keep taking it until 3 weeks after the last attack.

Ronny.

Title: Re: Hello to all.
Post by meljelene on Oct 3^rd, 2004, 2:20pm

Thanks for the continuing advice, guys. I'm going to try and check out my options. I'm having shadows today but nothing is breaking through so far, so I'm actually going to work today. What a concept. I'm a CNA at a rehab/managed care facility and a part time nursing student. Maybe I can "borrow" some o2 tanks from work. ;)

Title: Re: Hello to all.
Post by thebbz on Oct 4^th, 2004, 6:18pm

hey Mel, for short.
Sounds like you may need to do some doctor re-evaluation and planning. What doc would not consider O2 one of the best working abortives for CH? One that does not know much about it. Good docs are hard to find. Hope your doing better today.
BB 8)

Title: Re: Hello to all.
Post by Charlie on Oct 4^th, 2004, 8:46pm

Welcome and I'm glad you popped up. Sorry you had though though.

What Kevin posted makes perfect sense to me. Look into it for your own sake and good luck.

Charlie

Title: Re: Hello to all.
Post by meljelene on Oct 4^th, 2004, 11:10pm

Thanks everyone. I stopped taking the tylenol#3s two days ago. Since then I've been having shadows but nothing has broken through. I know it's too soon to tell, but remission time would be lovely after five long months. I'm going to keep on my doc about the o2, however. I'll be armed with a bunch of stuff I printed about it. One "good" thing about clusters, they sort of force you to be proactive about the care you get. ;)