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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> need some answers (wife extremely worried)
        
(Message started by: shakay on Feb 11^th, 2006, 11:33am)

Title: need some answers (wife extremely worried)
Post by shakay on Feb 11^th, 2006, 11:33am

Hi, my husband has been having headaches for 10 yrs. We've been married for 2 and I have seen him go through this before but this time I think I'm going to take him to the ER. He has been having them for 3 weeks. 2 or 3 a day. We have spent over 800 on imitrex in the last 2 weeks. Started when changing a blood pressure medication. Yesterday, I finally got him changed to Verapamil because I read online that they were good to help with CH, but last night he experienced three and told me last night that one time the Imitrex didn't help. Someone please help me. He has never had them this long. Has anyone heard of Verapamil helping or not helping?? and also has anyone ever developed a tolerance to imitrex. I just want to know how to make him better. He's going to a headache specialist this Thursday because we just moved here but I'm so worried about him. THank you for this site. It has helped me try to understand what my husband go through.

Shakay

Title: Shakey...
Post by Richr8 on Feb 11^th, 2006, 11:45am

..I'm glad you found us, but it seems there is oots more to do.. If you haven't done so already, read everything you can on this sight. Imitrex stopped working for me and I had to switch. I do no know about others experiences. I would strongly suggest that you get and try O2 as an abortive as soon as possible. It is a great first line abortive that works for many people with relatively few side effects. There are many treatments available, Verapamil is certainly one that is used with varying degrees of effectiveness. The key is to get to a good Neuro that understands CH as soon as possible armed with whatever information you can glean from this site. Info on O2 and various treatment regimens is on the right, so I would suggesst you review and be prepared to discuss wth the Neuro. I use O2 as an abortive, a prednisone taper to break my cycle, and Verpapamil as a preventive. You will get feedback on a number of different approcahes. Read, read, tread, and make an informed decision on how you want to proceed. There are no hard and fast rules . Different things work for different people.

Sorry t hear you folks are having such a rough time. Finally, make sure your suffere finds this site, as they will find it a valuable way to network with fellow sufferers.

Title: Re: need some answers (wife extremely worried)
Post by shakay on Feb 11^th, 2006, 12:10pm

thank you so much richr8. I appreciate you posting so fast. This is the longest he has ever had them. He has tried Prednisone in the past and says he didn't like it at all. It made him crazy. We may just have to do that for him to just break the cycle. I'm not sure. Thank you for your info. I appreciate it.

Title: Re: need some answers (wife extremely worried)
Post by Guiseppi on Feb 11^th, 2006, 12:43pm

I use prednisone but only for a week after the headaches start. It provides me a break while I wait for my lithium to kick in. I use 1200 mg lithium a day when on cycle, it stops 80-90% of my headaches. I then use oxygen and cafergot to stop the headaches that break thru. I also STRONGLY recommend oxygen as your first line abortive. No side effects and amazingly effective at stopping the head ache in its tracks. Read the link on the left about how to use it, used incorrectly it can be worthless.

Finally, you are a special perosn to be doing this research. My wife found this site for me and saved my sanity with it. Join the supporters group, lord knows they know what you are going thru. Bless you for being a supporter and good luck. Read up on the board, you will probably know more then your neuro about cluster headaches, sad to say.

Title: Re: need some answers (wife extremely worried)
Post by FramCire on Feb 11^th, 2006, 2:19pm

1. Verapomil is one of the first drugs that my headache specialist likes to use. It is a good thing to try. What dose has he been put on? I was on a normal dose and then bumped up to 480mg/day (2x240). If you are less than 480 and it isn't helping, contact your doctor about bumping up the dose. I don't have the link but E-Double usually posts a link to a paper on treating clusters that should help.

2. GET Oxygen. Get the right mask!

3. You said the imitrex didn't work for 1 of the headaches of the 3? Unless you are splitting the dose (see imitrex tip on th eleft), I don't think he should be taking 3 doses in a 24 hour time period. I am no doctor, but unless he is not taking the full dose, I think that is a mistake.

4. There are a million things to try. See if you can find a headache specialist or Nuero with CH experience and let them determine what to try next.

Title: Re: need some answers (wife extremely worried)
Post by E-Double on Feb 11^th, 2006, 3:50pm

Hello wonderful wife!!!!!!!

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you/he should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demandedfrom your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If he has the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: need some answers (wife extremely worried)
Post by Dragnlance on Feb 11^th, 2006, 8:02pm

First, let me THANK YOU!! for being so supportive. You have no idea what it means to have someone there during an attack, even if there is nothing you can do.

Listen to E. Demand Oxygen!!! Also make him drink (guzzle, slam, whatever you want to call it) a LOT of water. I recommend 2 12 ounce glasses as fast as he can down them. Possibly a can of Red Bull.

I cannot speak for the drugs, as I quit all drugs in frustration a few years back.

I wish you both luck, and I am sure glad you found us!

Dragnlance

Title: Re: need some answers (wife extremely worried)
Post by Kris_in_SJ on Feb 11^th, 2006, 8:09pm

Hi Shakay,

Welcome, and thank you for being a strong supporter (and worrier) for your husband.

Eric gave the the best of links regarding current cluster treatment. Please follow it, print it out and take it with you to the doctor. While Trex injects still work well for me, Oxygen is certainly the best first defense against this beast - no side effects and no rebound-type headaches.

I know it seems like your husband's cycle has been going on forever, but several weeks sounds like heaven to many here. My own cycles are rarely shorter than 12 weeks. The right abortives and preventatives (like Verapamil at high doses) can make a huge difference during those times. Don't expect Verapamil to work wonders over night. It generally takes a week to 10 days to kick in, and must be at clusterhead levels to work at all (for me that's 480mg/day).

Read all you can and ask as many questions as you need to. All of us here understand.

Hugs,

Kris

Title: Re: need some answers (wife extremely worried)
Post by Jonny on Feb 12^th, 2006, 5:27am

Imitrex can cause some people to have up to three times the HA's they would normally get, I switched to Zomig (Another triptan) nasal spray. Zomig works just as fast for me and lasts WAY longer with no rebounds.

Title: Re: need some answers (wife extremely worried)
Post by lionsound on Feb 12^th, 2006, 9:37am

Hello Shakay,
welcome :)

Even if he's going to see a HA specialist it is a good idea for you and your hubby to read and be informed and write down and ask lots of questions including the docs experience with cluster patients.

Does your hubby keep a headache journal? If he hasn't, bring what you wrote here ...it gives a very good picture of what is going on.

Good Luck! and please let us know what happens...
Be well and Pain Free!
-lionsound

Title: Shakey-more on the Pred
Post by Richr8 on Feb 12^th, 2006, 10:08am

... I will agree on the pred, even in my case it is very borderline with the psych factor, but I have decided it is worth the week or two of extreme high anxiety, sleepessness, and various psychosis, to break the cycle. If it was any worse, I could not do it. In my layest cycle I found Melatonin to be a great help with getting some sleep. I have now done the pred taper three times and the second and third time I delayed taking the pred. for several weeks in hopes that things would improve on theri own, When they didn't I went straight to 60mg of pred. which broke the cycle within a week (5-6 days).

Title: Re: need some answers (wife extremely worried)
Post by chewy on Feb 12^th, 2006, 11:18am

The good newa is you wont develop a tolerance to imitrex. The bad news is it might increase frequency.

My regimem:

Verapamil 480 mg per day for 2 weeks at onset of cycle. Continue until cycle breaks.

Prednisone taper at 2 weeks.

If that fails then inpatient DHE IV.

Imitrex injections (split dose) for aborting. 02 doesn't work for me.

9mg melatonin at night throughout cycle.

Title: Re: need some answers (wife extremely worried)
Post by shakay on Feb 12^th, 2006, 11:48am

I want to thank you all for the wonderful information. "E", thank you very much for the wonderful articles and websites you put up for me. It really helped me. I will print them off and take them to our new headache specialist. My husbands headaches seem to be decreasing a little. Having one or none in the day and definitely having one at night so I'm going to go and buy some melatonin today and see if that helps with the nocturnal ones. We will demand oxygen. Ya know when we first got married 2 years ago, I didn't really understand the monster, but this website has helped me understand more. Being a nurse I think it's the most horrific thing to explain how helpless I feel when I see him go through this. Thank you all for your answers and support.

Shakay