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        Supporter's Corner >> Supporter's Corner >> What can I do to help?
        
(Message started by: jmc1106 on Oct 8^th, 2003, 10:45am)

Title: What can I do to help?
Post by jmc1106 on Oct 8^th, 2003, 10:45am

Hello! I am wondering if any of you can offer advice on helping my husband. He had these clusters about a year and a half ago--the really horrible ones for three nights. His doctor prescribed a narcotic for the mild ones, and Maxalt for the really bad ones. He used 3 pills, and we got a refill for another 3, but thank God, he didn't have to use them. Our insurance company then kindly informed us that they would not cover any future refills, ever. $180 for three pills! Anyway, the CH's are back, been coming on for a few weeks, and the first really bad one struck last night. It's hard to say if the Maxalt works. It takes 25 minutes or so, so I'm not sure if it's the drug or the CH has just run its course. Is there ANYTHING ELSE I can be doing for him? Do you think we should call the doctor and ask about Imitrex? How much does that usually cost? We no longer have any RX drug coverage at all. Thanks for your help. I am NOT looking forward to tonight!

Jan

Title: Re: What can I do to help?
Post by Jackie on Oct 8^th, 2003, 11:51am

Hi Jan,
My husband is a clusterhead too.
Can you tell us a bit more? Has he tried oxygen as an abortive? It's less expensive and has no side effects (for most sufferers)? Has he ever been on any preventative drugs (verapamil, lithium, prednisone taper, etc)?

There are some 'home remedies' that help. Ice packs applied to the head/neck, hot showers for some, strenuous exercise at onset will help abort for some, strong hot coffee, car AC blowing directly in the face, Dramamine (over the counter motion sickness med.) at bedtime......to mention a few.

Good luck...please keep us posted.

Jacks 8)

Title: Re: What can I do to help?
Post by Margi on Oct 8^th, 2003, 12:00pm

Well, I ditto everything Jackie says here but have to add one thing....

he got 'the bad ones' for three nights? ONLY three nights? Are you SURE he has cluster headaches? Read the cluster quiz button at the left. Any neuro that would prescribe narcotics for clusters could also be misdiagnosing. Please get a second opinion ok? Cluster knowledgeable neurologists know that narcotics are not the drug of choice for clusters. Cluster cycles last much longer and each attack is a 'really bad one', not just for three nights. Cycles can start out mild, but they quickly build and stay that way for at least a few weeks.

p.s. there is a list of cluster knowledgeable neuros at www.clusterheadaches.org in the first menu on the left above the map (entitled Recommended Doctors).

Title: Re: What can I do to help?
Post by jmc1106 on Oct 8^th, 2003, 1:08pm

Well, no, I guess I am not certain of anything. When he had these last year, my husband had gone to the doctor complaining of the bad headaches (they really weren't ALL that bad yet). He went to his family physician, and when he told her the symptoms, she prescribed the Maxalt and narcotic. That very night, he had his first really horrible migraine. The doctor also felt that he had a sinus infection, and prescribed an antibiotic. After the three horrible headaches, DH continued to have migraines, but they were manageable. They certainly SOUND like Cluster headaches, from what I have read. They have now happened in spring and fall, they hit the same time each night (11-11:30), his eyes water. Once they start, they increase with very rapid intensity, and he can't even get the pills open by himself. He's just down on his knees, pushing his fists into his head, and says it's stabbing pain like a knife. It takes about 20-25 minutes, and then they begin to subside. He did go back to the family doctor last week as the migraines were starting to get worse and he had to take a narcotic to knock one down. She thought his right sinus looked inflamed, and she put him on an antibiotic again. I wondered if maybe the season plus a sinus infection could be triggering these attacks. But they are definitely worse than a plain old sinus infection. Does this sound familiar to anyone?

Title: Re: What can I do to help?
Post by jmc1106 on Oct 8^th, 2003, 1:15pm

Oh I remember a few other things...seems like just one eye watered, the pain was on one side of his head. And they seem to leave fairly quickly, once they do subside, which is good! Last night we were lying in bed, and he finally quieted down and I dozed off. Suddenly he was giggling and said, "I can't believe I licked the pill out of your hand!" (it fell apart as I was taking it out of the package). And then he was asleep. Goofy!

Jan

Title: Re: What can I do to help?
Post by Woobie on Oct 8^th, 2003, 2:27pm

Hello

Just wanted to welcome you here. I cant add anything to what Jackie and Margie said... they are the wise ones.

Does your husband come to this site?? He should come here...

Oxygen!!!
Tina :-*

Title: Re: What can I do to help?
Post by Ree on Oct 8^th, 2003, 2:28pm

Hey Jan what a bummer that we have to meet like this... as Margi said there is a wealth of information on this website... If it is cluster (sounds like it to me) we will be seeing you here on the board... The last time he got these attacks how long did they last? Did he see a Neuro? keep us up to date on his treatment..... ree

Title: Re: What can I do to help?
Post by Margi on Oct 8^th, 2003, 3:06pm

I agree with Ree - it does sound like a cluster attack. But, still, the cycle length is strange - if it's only lasting three days. Or do you mean that he's only had three attacks that he's not been able to manage? (it's so hard to know sometimes on the internet!)

Again, a doctor that would treat clusters as a sinus infection is just plain scary. PLEASE get him in to see a better doctor!!! Ask to be referred to a cluster friendly neuro.

Title: Re: What can I do to help?
Post by jmc1106 on Oct 8^th, 2003, 5:58pm

I'm sorry, I wasn't too clear. It was three times that he felt like he was out of control. That's how he was last night too. Actually, the headaches and migraines built up for weeks, and then took several weeks to subside too. This afternoon he called and said he was having another one...not as bad, and he sat it out in a parking lot in his truck for an hour.

The doctor has asked us to fill a RX for Enderol(?) as some kind of preventative. I haven't been able to find much info about that. And we will follow up to see what the next step is. We haven't seen a Neuro yet, but I guess that is where we are headed. We'll see how it goes tonight...

Thanks!
Jan

Title: Re: What can I do to help?
Post by TxBasslady on Oct 8^th, 2003, 11:30pm

:)
Hi Jan,
So sorry that your husband is suffering. CH takes a toll on the entire family. I hope tonight is alot better for you two.

Yes, you are right. The cost of the meds is quite expensive. I firmly believe that the insurance companies need some education on CH. Makes no sense to me that they can and will approve a RX and then turn around and deny the same medication when you go to get a refill. I get on a real jag on this subject cause it happens to so many that suffer from CH.

However, when your hubby goes back to see the doc, have him ask the doc for some of the free samples of the meds that he is going to put him on. The doc's have a stockpile of these meds. Don't be afraid to ask for them. Rant, rave, and have a freakin fit if you have too. Do whatever it takes to get the meds needed. Explain to the doc that you have no insurance. The samples cost the doc's zero dollars. Get whatever free samples you can, and when you need more, ask for them. You may be surprised at how many doc's will do this.

I went on a Prednisone taper for my cycle. And the prednisone stopped my cycle the same day I started taking it. That was 29 days ago, and I have been pf ever since. That's not to say that it works for everyone. But the prednisone is relatively cheap. If your hubby has CH, then that may be a good place to start. Some of the sufferers here on the board had no luck at all with the prednisone. But it worked for me, and you might check with the doc and see what he thinks. Never hurts to ask. 8)

I have no knowledge about enderol, so I can't help you with that. But I am sure that others here may have taken it. But again, what works for one does not necessarily work for another. So, you just have to try and remain optimistic.

Welcome to the board, and please continue to post and also read the other posts and you can get an idea of what meds and solutions have worked for others. There is a wealth of information here. And lotz of support and love. Someone is usually always here...24/7. So, if you have a problem and need some help, or if you just need to vent, then this is the place to be.

Hope your hubby gets what he needs to fight this battle.

Sending you best wishes and lotz of pf vibes to your hubby. ;)

Jean

Title: Re: What can I do to help?
Post by Miss_Deleny on Oct 9^th, 2003, 6:55am

Welcome JMC! Sorry you had to look for us but sure glad you found us. :)

I'm sorry to hear that your husband is suffering so. You have been given some great advise above. There isn't anything that I can add to what has already been said. So, instead, I will just welcome you and let you know that we care about you and your husband. Please keep us posted on how he is doing as well as yourself.

~April~

Title: Re: What can I do to help?
Post by jmc1106 on Oct 9^th, 2003, 8:11am

Okay, it's a new day...and I'm sorry, I've forgotten to thank everyone for the warm welcome and helpful advice. DH took his Inderal (I had the spelling wrong) at supper time. It's a beta-blocker that sometimes helps prevent migraines. He still had an attack at 11:15 last night (right on schedule!), and he still had to take a Maxalt, but it wasn't quite as severe as the night before, and he started getting some relief 15 minutes after taking the pill. We tried an ice pack too (actually a package of frozen corn), and a cup of hot tea. I feel better about the situation, but now we are down to one Maxalt pill. If he uses it tonight, we need to see the doctor about getting a refill or something else. I feel like we need to have something in the house in case of a surprise attack. I DEFINITELY plan on asking about samples!

Anyway, thanks for all the advice. If nothing else, it really helps to know that other families go through this, and many have it much worse than we do.

Jan

Title: Re: What can I do to help?
Post by Margi on Oct 9^th, 2003, 8:50am

Hi Jan,
Thanks for clarifying - yep, it does sound like it's clusters. Did the hot tea make things worse for him or help him? If it worsened things, you might try to give him a glass of ice water instead - that, combined with the ice (or frozen veggies) helps to reduce swelling in the roof of the mouth under the sinuses.

Also, please do check out oxygen - it's the most popular abortive out there.

Please stay in touch and DO keep fighting to get him in to a neuro a.s.a.p. Most family docs haven't got a clue about clusters.

Hang in there.

Title: Re: What can I do to help?
Post by TxBasslady on Oct 9^th, 2003, 9:09am

:)
Good morning, Jan

You are correct when you say that some have it alot worse. There are some here that get hit constantly.

I, like your husband, have only had CH about 20 months or so. Had my 1st CH in Jan of 2002. Like your husband, my 1st ha's were manageable. It wasn't until Sept of this year that I went into a full blown cycle.

My ha's were always around 2:30 - 3:00 a.m. My hubby would put ice cubes in a bowl and add a bit of water. He would sit with me and keep the cloths changed out with the cold water for me while I reeled and rocked and cried with the pain. I had to have the cold for my temple and eye area and another cloth for the back of my neck. It really did seem to ease the pain somewhat
Also, I found that if I didn't lie flat, the pain wasn't as bad. So, for a couple of weeks, I actually slept propped up on the sofa. Especially after an attack, the sofa worked very well for me.

I have a real passion for this board and the people here that suffer so much. When I was suffering, they came to my rescue. So many of them were right there for me. And they still are. Even though I am pf now, I will stay here on this board and support and give and do whatever they need me to do to help. I will not desert them, for there are many here that have it much worse than I ever did. And I know what the pain is like and I know what that love and support did for me.

Thanks for the update on your hubby. I sincerely wish the best for the both of you. Please hang in there and keep us updated. And yes, don't forget to ask for the samples ! :)

Sending lotz of pf vibes to your hubby...........

Jean

Title: Re: What can I do to help?
Post by Patrick_A on Oct 13^th, 2003, 11:06pm

Hello JMC, Welcome to the CH board. I wanted to help you with some definitions so you'll be clear. Migraines aren't the same as CH's(Cluster Headaches) From what i understand about your posts, Your husband suffers from CH's and not Migraines. I occasionally get migraines during the year and they are a very real pain, but trust me...Their is no comparison on the pain chart for CH's. CH's are intense and quick, Migraines are long lasting with a dull but still very painful throb.

Wishing you and your husband much success in dealing with his condition.
Patrick

ps....I'd trade 1 CH for 5 Migraines anyday of the week! :)

Title: Re: What can I do to help?
Post by JenniferRuth on Nov 16^th, 2003, 11:08am

Hi, my husband and I are new to this board but not to CH. We have been battling this since we moved from the Carolinas to Massachusetts in 1991. We figured it had something to do with the shorter days and light deprivation. A doctor in Dartmouth got him started on Prednisone - nasty stuff but it worked. Very scary prior to that. It was like he was suffering from a stroke and he became suicidal. At one point he fell down the stairs because he blacked out for just a minute and forgot he was on the stairs.
Anyway, last night was particularly bad because he has a headcold. (Our 2 year old daughter was also up with an earache, so I'm exhausted.)
I was reading the statistics about sufferers. Predominantly middle aged men. What are their occupations? What are their physical conditions and exercise levels? I read one supporters post that suggests strenuous exercise to abort a CH. We've tried hot packs, cold eye gel packs, massage, hot baths/showers, most over-the-counter meds like sudafed, benadryl, nyquil, advil, tylenol PM...The idea of dramamine was interesting. He mostly uses O2 now and sits in front of a light box. But of course then he's wide awake after the headache subsides and he can't get back to sleep and is often afraid to go back to sleep. We're considering the prednisone again just to get some relief.
I also read one post that talked about non-medicine solutions, ie: lifestyle changes. I'd like to know if there's been any research into the idea of being active vs. sedentary.
Thanks to anyone who can give me some short answers without having to read the whole history of the board. I apologize to those of you who have been on this board forever and my questions have probably been answered somewhere on here, but I'm just too tired right now and I'd really love any quick advice. We both are desperate for some sleep. He's sleeping now, but the 2 year old is up and raring to go, so one of us has to be awake.
Thanks again.

Title: Re: What can I do to help?
Post by Prense on Nov 16^th, 2003, 12:07pm

Welcome Jen!

Unfortunately, there is no cure all for CH...if there was, we probably would not be here. All the advice in the world for you is in vain unless your husband proves/disproves each method. It is true, strenuous exercise helps some people. For me, certain types are a definate trigger.

Occupations vary...from being out of work to labor to management, etc.

Predsinone has helped many...mainly episodic sufferers. It is normally prescribed with a longer term preventative such as verapamil or topamax to get through the cycle.

It's a great thing he is using O2! Other than that, imitrex works well for many as well as zomig for aborting.

Many non-med coping techniques are discussed here...some with controversy. Ice tends to be a common usage...some respond better to heat.

My best advice is to find preventative and abortive means that are practical and interrupts "life" as little as possible. Constantly looking over your shoulder wondering when the beast is going to strike can be just as devistating as the attack itself. It's extremely difficult at times, but do anything you can to not let CH run your lives.

As a 10 year chronic sufferer, I have yet to find a preventative med/means that works at all, but I assure you that I will continue looking. I carry imitrex injections with me wherever I go, and it has really given me my life back. I use O2 when I am at home...although it is not very successful for me (about 50%).

Best wishes for both of you!

Chris

Title: Re: What can I do to help?
Post by JenniferRuth on Nov 16^th, 2003, 1:27pm

Thanks for the response. As I said, we've tried a number of things, but I think we'll call the doc about imitrex injections. O2 doesn't travel well.
I have read that there are certain foods that are linked to attacks. Onions, lettuce, etc. We've found that red wine/tannins are evil and provoke almost instantaneous onset. We're at the point where I was when my infant daughter started throwing up while I was nursing - eliminate all foods, add cautiously one at a time. Can you and other provide a pretty comprehensive list of suspect foods?
Thanks.

Title: Re: What can I do to help?
Post by cathy on Nov 16^th, 2003, 3:16pm

Jan, sounds like the combination of baby and hubby with CH is taking it's toll on you, Margi's advice is to take a long hot bubble bath.... I suggest you do that first and foremost!!

It saddens me to see anyone else having to go through what us supporters go through, the emotional pain of knowing someone you love is in so much pain, and that there is absolutley nothing you can do to stop it....that sux!! Just know we are all here for you, there's usually someone on the board almost 24/7 ......

Welcome to the family and sending PF vibes from across the pond..

Jennifer....Welcome to you also.

Cathy

Title: Re: What can I do to help?
Post by lapowers on Nov 16^th, 2003, 7:17pm

Welcome Jan

Sorry to hear your husband is suffering. I can relate my husband has been chronic for the past 13 yrs. The past two months he has been really bad. Nothing has helped. Normally his meds will allow him to function at a k-6. I am slowly watching him go down hill. I have to stay positive. I just sent all is med records off to the Mayo clinic in Scottsdale, Arizona. I have my fingers crossed that they will accept him as a patient. There is a doctor there doing trials on neuro-stimulator implants. He already has one but needs to have it looked at and adjusted. We are hoping this maybe the doc in the US that can give him relief.
When my husband was first diagnosed 13 yrs ago he began with a headache for about 3-days that developed into severe sinus infection. He took 4 types of antibiotics and then required sinus surgery to clear it up. He then saw a pain specialist and neorologist that said his CH came on first which caused his sinus to be inflammed. He had never had headaches or sinus problems prior to this.
I will keep your in my prayers along with mine. Laurie

Title: Re: What can I do to help?
Post by Prense on Nov 16^th, 2003, 8:25pm

on 11/16/03 at 13:27:42, JenniferRuth wrote:

Can you and other provide a pretty comprehensive list of suspect foods?

For me...beer and rum. That's all I have ingested that has triggered an attack for me.

Other than that, long distance running...

Title: Re: What can I do to help?
Post by HannahFroukje on Nov 19^th, 2003, 3:00pm

We've been trying magnesium tablets two days now, and it seems to help. It sure is worth a try if you're bugged by the costs of treatment. I have been giving it with a homeopathic drug to it to help regulate it, but it seems that it works perfectly for some CH-heads without that.

Couldn't hurt to try could it? It's a cheap solution, if you're one of the lucky ones it works for.

I bought magnesium citrate to be fast absorbed and a combo of calcium/magnesium for the night. I'm new to this magnesium stuff, but if I understood the article well, you can absorb quite a lot (you will probably have to use quite a lot). There's a discussion about this on the general board title: magnesium. There's a link over there to a website with info on dosage etc.

Watch out with the vitamine B they advise to it to make the magnesium be absorbed better, if you buy a complex B, know that vitamine B3 can give a "flush" to the head which is completely harmless for healthy people, but I wonder what it will do in a CH-head. Other vitamine B's don't have that.

Good luck!!!!!!!