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        Supporter's Corner >> Supporter's Corner >> Somebody Please Help me!!
        
(Message started by: woodyclarke on Jul 5^th, 2007, 2:31pm)

Title: Somebody Please Help me!!
Post by woodyclarke on Jul 5^th, 2007, 2:31pm

Hi all,
My boyfriend of 3 years has suffered from cluster headaches since he was 19, he is 32 now. Presently he is in a really bad period. I am at my wits end, I have been a nurse for 18 years and I have never witnessed anyone in such pain. I feel helpless , there is nothing I can do to ease his pain. Last night I sat on the couch for an hour and cried while he screamed and moaned in the shower as he was punching the tiles. He presently is on nadolol daily and zomig. It's not even touching it, his family doc isn't treating this aggressively enough as far as i'm concerned. Any suggestions???? WE are willing to try almost anything to get some relief from this nightmare. Andy :(

Title: Re: Somebody Please Help me!!
Post by crftymom on Jul 5^th, 2007, 3:36pm

Hang in there hun. You are doing great coming here for help.
Someone will be here soon to give you some help. I don't know enough about meds. to help you out. Sorry you have to be here, but happy that you found the best place to get some help.

[smiley=hug.gif]
Margo

Title: Re: Somebody Please Help me!!
Post by Guiseppi on Jul 5^th, 2007, 3:45pm

Bless your heart for being a supporter we love you guys. I don't know the rules and laws in your country, The first girl who responded to your post put out a yell for help on the main board, many more people will be posting, hopefully some from your part of the world.

Can you get him access to oxygen? You need to get him breathing pure oxygen, no nasal canulas no re breather masks, at the first hint of an attack. For me it will abort an attack in less then 8 minutes.

Get some of those energy drinks on hand, Monster, Rock Star, any that contain the combination of caffeine and taurine. Many find relief by slamming down 1-2 of those at the first hint of a head ache.

Get him to a head ache specialist. There is so much available to help manage...not cure....these things. It makes me sick to my stomach to think of someone facing these things without any help. Stay on the board, keep asking questions, get him to register on the board so we can help him. Much love to you for reaching out for him!!!!!

Guiseppi

Title: Re: Somebody Please Help me!!
Post by Jackie on Jul 5^th, 2007, 3:49pm

Hi Andy and welcome...
I'm married to a clusterhead....
We'll see if some more knowledgeable folks come along to help you.
First a few questions...Is your boyfriend on any preventative drugs...like verapamil, lithium, etc.?

You mentioned zomig. Does that not abort the HA.
If not there are other abortives to try. However, my hubby always had good luck with Zomig. Is it in spray or pill form. Sometimes the pill takes to long to kick in.

Does he have any 02? Oxygen is the #1 abortative for most sufferers and has no side effects. It must be used properly to work. There is a wonderful explanation on the OUCH site. I would suggest you check it out.

What about home remedies.....hot coffee, red bull, hot or cold compress? Some work and some don't so you all will have to experiment.

You sound like a good supporter...I'm proud of you. You will be his biggest advocate and greatest support so hand in there. Try to remember...it's painful and pitiful condition but it is not fatal.

Read as much as you can...here and on the OUCH site...knowledge is power.

Keep us posted.

Good luck, Sweetie......
Jackie

Title: Re: Somebody Please Help me!!
Post by Rosybabe on Jul 5^th, 2007, 3:49pm

Andy!

Thanks for being such a great supporter!! You husband is very lucky to have you!

He needs Oxygen!! there is a very good link to a resource page that he can take to his GP, it is written by someone (a very recognized Neurologist) who knows about clusters...

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

he can try with melatonin at 9mg and maybe Benadryl until he gets to see his Doctor. Red Bull can work too.

please show this article to your boyfriend.

Good Luck and you guys are not alone anymore!

Pain Free wishes for him!

Title: Re: Somebody Please Help me!!
Post by Mosaicwench on Jul 5^th, 2007, 4:17pm

God bless you for supporting your partner like you do. I'm married to a clusterhead - 15 years with the beast, 25 years married.

The advice given here is awesome - I can't add anything else except see what you can do about getting him to a knowledgable neurologist. Write down and ask questions that come to either of you - he should be able to either answer them, offer to research the answers, or admit he/she doesn't know the answer. There's no shame in not knowing, it's not being willing to find the answers that will tip you off that he's not the doc for you.

My hubby's neuro is like a member of our family - a very valuable, very compassionate member of our family.

Best of luck with your partner - standing on the sidelines watching a loved one in this kind of pain is the hardest thing I will ever do - I'm sure of it.

(edited to add: Oxygen - it truly works miracles for some clusterheads - my DH included. It's NOT a cure, but gotten to fast enough and inhaled properly, it can abort an attack in several minutes or keep a monster at bay just a little while longer.)

Title: Re: Somebody Please Help me!!
Post by marlinsfan on Jul 5^th, 2007, 4:26pm

Ditto on the Oxygen. It's the #1 weapon of choice for many of us. I'm an episodic clusterhead and Oxigen saved my life and likely my kidney too.

Take this to your boyfriends Neuro. It has all the info on the right meds to treat this condition:

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

But most importantly, watch what he heats. Stay away from alcohol, as that is a certain trigger for many of us. For me, also aspartame, nuts, milk chocolate, tomatoes and anything citric.

Red bull is a good abortive too.

Title: Re: Somebody Please Help me!!
Post by Angie on Jul 5^th, 2007, 5:28pm

Hi Andy

I am Barry Sword's supporter, I know how you feel. I am sorry you are here but this is the best place for both of you.

First he needs to educate his doctor and ask to be referred to a Nero. Our Nero is located in Huntsville, Ontario.

He put Barry on a Predizone tapper with 480 mg of Verap as a preventative. His nero also scripted him Oxygen with a 10 to 15 litres per minute regulator.

Oxygen is a must. Works for most folks here to abort the CH.

Please check your PM's

Angie

Title: Re: Somebody Please Help me!!
Post by Sandy_C on Jul 5^th, 2007, 6:09pm

Hi sweets, and bless you. If it weren't for supporters like you, we just might not be here at all.

You've been given great advice, find a good neuro, and get him on oxygen.

Ask any questions you need to, we will do all we can to help you. And, as a supporter of clusterhead, you need support too. It's not easy watching your loved one going through such pain and feeling helpless. Come talk to us any time YOU need a shoulder.

Sandy

Title: Re: Somebody Please Help me!!
Post by Patrick_A on Jul 6^th, 2007, 10:13pm

My 1st suggestion is to find a competent Neurologist.
Then once the diagnosis is 100% CH's then you let the Neuro handle the day to day drug regimen. Regular Dr's are worthless, they don't have a clue about what they are dealing with.
There are so many different options and you'll have to wade through till you find one that works for you. Rest assured though, probably 80% of the people here find some relief in some way or another.
I personally have been painfree for 4 years after having had CH's for 28 years.
Prednisone and Verapamil were my saviours.

Patrick_A

Title: Re: Somebody Please Help me!!
Post by Lotus on Jul 7^th, 2007, 6:23am

Hello Andy and welcome,

Thank you for being such a caring supporter and for looking after your boyfriend. I am sorry to hear he is going through such a bad cycle.

Here are a few things you can do to help him

1- Stock up on coffee, Red bull drinks, ice and Melatonin. You can buy melatonin from a health food store.
While waiting for the meds or to be the neurologist he can try the above. As soon as your BF feel an attack starting, such as some tingling sensation behind the eye, give him some strong coffee to drink or some Red bull. The caffeine helps constricting the blood vessels and it can sometimes abort an attack or reduces the intensity. Grab some ice or ice pack, wrap it in a wet towel and put it on his neck, shoulder, and the side of the face where he gets hit. Change the ice and the towel if it dries out or the ice melts away. This will help reducing the intensity of the pain. Ask him to feel the back or side of his neck on his cluster side while being hit, if he can feel a small soft spongy tender lump, put the ice directly on it. Its the nerve ganglion and putting the ice directly there reduces the pain. Ask him to try cold of hot shower on the head. Some people find cold water helps, others like the hot water better. He may need to experiment here a bit. Melatonin is a supplement and when taken at night can help reduce the night hits. It doesnt work for everyone but for many it makes a difference. He can start at 3 mg first increasing by 3mg every 3,4 days or so until it works or until he reaches a high dose. Most people here find relief at 9-12 mg but some goes as high as 20 mg.

2- Encourage him to drink more water. Some people find drinking loads of water through the cycle and during the hits help. There is a link to that on the left hand side.

3- Talk to his GP about better abortive AND preventive medications. The best abortive is oxygen. His GP can prescribe oxygen 100% via NON-rebreather mask and he can hire the bottles of oxygen from medical suppliers. Its natural and without bad side effects and it works as an excellent abortive for many many people here and can abort up to 95% of all the hits. Once he has the oxygen sets up use it at the first twinge for best result. The fastest abortive is Imigran injections, then its imigran nasal sprays. Is he using Zomig tablets? they are too slow to work for cluster and he shouldnt rely on them for bad attacks. At least get the Zomig nasal sprays. Some people find Zyprexa tablets work well as abortive too although there is a risk of diabetes if taken too many. His GP may have samples of Zyprexa that he can try. He can start from as low as 2.5 mg up to 15 mg.

3- When the cycle is bad, he should ask his GP for a script of Prednisone and start a taper. The dosages for a pred taper is very invidualised so it will be up to the doctor to determine. This often blocks or reduces the number of hits considerably while waiting for the preventives to kick in.

4- There are many medications used as preventives. They range from Ca channel blockers such as Verapamil to anticonvulsants like Neurontin and Topamax, even Lithium Salt works well for many. He may need one or a combination of them. Some people finds certain antidepressants helpful too.

5- Pain killers may be used for the acute stage to help coping but generally they dont work well for CH pain since CH pain is nerve pain. There is a strong risk of addiction with most pain killers.

6- Sometimes the hits can be so bad that nothing works and he may need to be hospitalised for IV treatments, often consisting of DHE, a very powerful vasoconstrictor.

7- It is of utmost importance that his CH be managed by a neurologist who is experienced with treating headaches, especially CH. Unless actively researching into this area, the average GP usually doesnt have enough knowledge or experience to prescribe the right combination of preventive meds. His GP can prescribe oxygen and imigran first up though and then follow up whatever regime the neurologist recommends. You can let us know which area you live in and someone from Canada can advice you of the best local neurologist to see.

Title: Re: Somebody Please Help me!!
Post by Lotus on Jul 7^th, 2007, 6:24am

cont ...

8- If all meds fail, your BF may want to look into alternative meds such as kudzu, magnesium and taurine supplement and shrooms or seeds. Quite extensive information on each and everyone of these alternative meds are here on the board and on the clusterbusters board. If he is interested give a holler and we will point him in the right direction.

Its also very important to let him know that you are here for him and so are we. Encourage him to join the Board and post. He will get a lot of relief from being able to talk to people who truly understand what he is going through. Both of you are most welcome to ask, share, whinge .... whenever you wish. We are here to help.

Please look after yourself. It can be very tiring both physically and emotionally for a supporter. You need to be well and strong for him to lean on through this rough patch.

Read as much as you can here, go back on past posts as there is an incredible amount of knowledge and good advices here for both supporters and CHers alike. This Board has helped saved the lives and sanity of many. Dont hesitate to ask whatever, whenever.

I am a supporter for my husband who has CH. He is in remission now but he had a nightmare cycle last year lasting nearly 8 months so I know how hard it is for you. PM me anytime you wish to talk. I found it very helpful to be able to chat to other supporters when things were difficult.

Hang in there, it will get better. Your BF will be able to get this under control and life will be rosy again. Painfree time ahead and coming soon.

Take care and painfree wishes.

Annette

Title: THANKS YOU FOR GIVING US HOPE
Post by woodyclarke on Jul 8^th, 2007, 2:26pm

I want to thank everyone who has taken their time to message us.. I am overwhelmed with the compassion shown to us. I have received so much good information and helpful tools. Mike is presently on Prednisone. He goes to see a Neuro specializing in headache in early August. We stocked up on Monster energy drinks, magnesium and melatonin. Basically we are trying a little bit of everything. He goes next week to see his family Doc. I am going with him and we are going to ask for O2. If we don't get any there I'm going to see about getting Welders O2. I"m still having trouble coping with the headaches while he is having them. The other night I just went and sat outside on my porch. What do other supporters do???? Thanks again everyone. Andy and MIke :)

Title: Re: Somebody Please Help me!!
Post by Jackie on Jul 8^th, 2007, 2:43pm

Hi again, Andy...

I would suggest you ask Mike what he wants you to do during his attacks. Some CHer want to be left completely alone...others want someone close.

Blake likes for me to be close. He says it helps him stay calm and breath his 02 more evenly and deeply. I speak softly to him ever so often....telling him he's doing good and it's almost over. When it eases up I get him a cold drink, a cig ready and a cold cloth for his face.

Like I said....talk to Mike. You two can get your game plan figured out when he's not under attack.

Now...Please, it's very important for you to stay calm. He'll be reassured if you stay positive. Well...that's how it works for us anyway.

Good Luck, Sweetie...
Jackie

Title: Re: Somebody Please Help me!!
Post by Patrick_A on Jul 8^th, 2007, 5:11pm

I used to like having my neck and head massaged until it got fullblown. Then I wanted to be left alone. I never wanted anyone to see me bang my head and pull my hair out. It is soooo personal at that point.

Patrick_A

Title: Re: Somebody Please Help me!!
Post by marlinsfan on Jul 9^th, 2007, 3:51pm

on 07/08/07 at 14:43:26, Jackie wrote:

I would suggest you ask Mike what he wants you to do during his attacks. Some CHer want to be left completely alone...others want someone close.

Jackie hit it right on the head (no pun intented!). We are all different, and all have different wants and needs. I for one hate to have my wife see me when I'm getting hit. I'm more concerned about her than me, as I know my pain will pass. It always does. There's nothing she can do to make the pain any less intense or pass quicker, so why make her suffer through the hit with me?

Ask Mike. He'll tell you.

Title: Re: Somebody Please Help me!!
Post by seasonalboomer on Jul 9^th, 2007, 4:16pm

Bless you as a supporter.

As for the alone versus attending support during a hit... I withdraw like an injured animal to the quietest most alone spot in the house. Don't want no company, don't welcome any. "Just let me have my Oxygen in a cool dark room and I'll see you in awhile" is pretty much my message to my supporter.

Others are different.

I'll put in another vote for the O2. The stuff rules. It takes care of 80-90% of my hits, leaving Imitrex to mop up what's left of me for the other 10-20%. With those tools I'm able to manage CH.

The past couple years have seen several cycles but my wife has even acknowledged that with these tools my CH cycles are barely even a blip on the life disruption scale anymore. The hits come and they are distinguished. Not exactly a "sunny" period for me when they do come but I've worked hard at trying to minimize their impact.

Live.

Scott

Title: Re: Somebody Please Help me!!
Post by QnHeartMM on Jul 15^th, 2007, 4:41pm

My CH'r (Guiseppi) uses the 02 along with other things he mentioned. But during his CH he needs to be alone. I always know when it's hitting because I hear the banging of the 02 tank as he gets it set up. I notice he has a real low tolerance for heat or cold, so I try to make sure the house temperature is pretty even during that time. He likes the fan blowing on him, and just tv white noise, but no talking.

I imagine others are different but that's what seems to work for Joe. When it's over he usually just needs to sleep.

If I had plans for later that day, no matter how much I wanted to go, I cancel. He needs rest, it's like a hangover after....(probably a bad comparison but that's what I call it).

Title: Re: Somebody Please Help me!!
Post by clusterwife on Jul 19^th, 2007, 3:02pm

When he yells, be quiet. when he needs, get it. When he says he wants to die, love him. When it's over, remember, the "headache" said all those terrible things, not the man. He loves you, he hates the pain. Leah.

Title: Re: Somebody Please Help me!!
Post by Mosaicwench on Jul 19^th, 2007, 4:47pm

The other night I just went and sat outside on my porch. What do other supporters do????

I spend a lot of time on the porch or in the basement when my clusterhead is in cycle. It's what HE needs and I'm happy to do it.

clusterwife wrote:
When he yells, be quiet. when he needs, get it. When he says he wants to die, love him. When it's over, remember, the "headache" said all those terrible things, not the man. He loves you, he hates the pain.

Very well said - and it can't be said enough - don't take what he says personally while in the midst of a hit - it's the pain talking, not your loved one.

Stay strong.

Title: Re: Somebody Please Help me!!
Post by sldrswyfe on Jul 20^th, 2007, 11:44am

Im sorry Woody C...I can only imagine how you're feeling listening to the screaming & pounding...it's ok.

The above is all true...(Im a CH) and Oxygen is a MUST..not only in abborting the pain, it decreases the anxiety level of the CH considerably knowing that there is "relief" available and they don't have to take the entire ride alone.(esp when having repeated hits)

One thing I wanted to mention, not everyone likes cold applied...I don't...in fact the thought alone makes me cringe...I like heat on my neck, face (the affected side)in the form of a warm cloth, a heating pad wrapped in something SOFT, or those heating things you put in the microwave...ask your BF when he's NOT in pain what he wants...don't attempt anything during a hit.

This site has SO MUCH information to read...so many experienced sufferers and supporters...you will do fine.

And Jackie, Pat...can I borrow or rent either one of you?? These ladies are good.... Fondly, Sherri

Title: Re: Somebody Please Help me!!
Post by sldrswyfe on Jul 20^th, 2007, 11:55am

Sorry, I don't know how to "edit" just yet...

A good point Lotus made...was about that "bump" in the neck or shoulder...I get that in my neck and on my shouder...I apply constant pressure to it with my my thumb...and if I "move" it the right way it sometimes takes the unbearable edge off...hard to explain...kind of takes the burning or "ice pik" out which is the feeling that makes some of us punch and yell...

Keep reading and reading and reading...

Title: Re: Somebody Please Help me!!
Post by Margi on Jul 20^th, 2007, 1:26pm

on 07/19/07 at 16:47:34, Mosaicwench wrote:

Both excellent posts. I, too, have done some porch sitting. It's the most helpless feeling in the world, knowing there's a war going on inside and you are powerless and weaponless.

I don't have anything of value to add other than to tell you you're not alone with YOUR pain - lots of us here share it with you. Sometimes knowing that you're not alone with it helps a little bit.

Hugs to you,
Margi

Title: Re: Somebody Please Help me!!
Post by sldrswyfe on Jul 20^th, 2007, 1:37pm

It makes me sad for you...thinking of you all sitting out there on the porch alone...I know what feeling helpless feels like. :'(

Us knowing you are there to come to when it's over is priceless.

Title: Re: Somebody Please Help me!!
Post by Rosybabe on Jul 20^th, 2007, 2:51pm

when I get hit and I get hit normally at night, I like to be alone, I go into the bathroom and pray until the pain is gone. I kind of like to talk to God alone ;)

because I found out that when the hit is big, I says things like I just want to die and call my gone family members to pick me up and that make my family very sad, my mom will cry non stop and my husband gets very upset.

I don't like them to see me like this but I appreciate when they come and silently change my ice pack for a colder one or when they refill my glass of water or if they bring me a clean PJ because I sweat a lot when I have a hit or after the pain is gone if they massage gently my neck and my shoulders..I am so sore after so it helps me relax...

just being there for me means the whole world...

Title: Re: Somebody Please Help me!!
Post by George_J on Jul 20^th, 2007, 8:53pm

I have very little to add to the excellent advice you've gotten so far. From your description, however, it sounds as if his reactions to the pain may be making his experience of an attack even worse.

I'm convinced that the mechanisms behind an attack are outside voluntary control. You can't make an attack stop by "thinking" your way out of it. But you can control how you react to the pain. And that can help.

I've posted this before, but it's a good time to do it again, I think:

No matter what medications or treatments you use, sooner or later you're going to face a hit with nothing but your naked brain. It's common for a CH'r to panic at times like these, and to act in ways that--while not increasing pain, increase the effects and the perception of pain.

Like anything else in life, experience counts. Most of us who've had these for a long time have had to learn how to cope with a hit on our own. I hope that what follows may be of use, and may quicken your ability to take a hit with some measure of aplomb. Try these things--if they work for you, good. If they don't work--well, what have you lost?

First a couple of caveats: This will most likely not shorten a hit, nor will it decrease the actual pain--only the perceived pain. It probably won't work with anything higher than a Kip 8--the intensity is just too high to concentrate on what you're doing.

There is nothing mystical or spiritual about this--it's simply a way to calm yourself and to decrease your perception of pain.

First, accept that you're getting a hit. Denial won't help, and struggling won't help. Go to a quiet, dark place so you can concentrate. You want everything in your visual field to be fuzzy and diffuse. Sharply defined objects can serve as a metaphor for the focus of pain. Although many clusterheads are not light-phobic, darkness helps.

Sit upright. As you know, it's not possible to lie down. Don't pace, don't fight. Extremely difficult to do, I know, but it's worth it. Sit quietly.

Begin to breathe slowly, rhythmically, and deeply, whether or not you're using oxygen. This will serve to calm you, and will increase the oxygen content in your blood.

Consciously relax the individual muscles in your face, scalp and neck, one by one. Continue to breathe slowly and deeply.

Inside the pain, there is a focal point--a knifepoint--most likely behind your eye. Focus your attention on it, and locate it.

Got it? Now gradually shift the focus of your attention to an adjacent area on the headache side where the pain is less intense. My personal favorite is just under the skin on the forehead. Your attention will shift back to the knifepoint again and again, but don't let that upset you or discourage you. Focus your conscious attention away from the knifepoint.

Next and last, begin to move in some rhythmic manner. I turn my neck slightly to "click" over the knot that forms at the base of the neck, over and over. Others rock back and forth. One person I know of on this board hits his leg with his fist.

Be calm. Don't think about much of anything, and above all, don't worry.

The result is a trance-like state where the pain still exists, but your attention is less focused on it. Sooner or later, the hit will end. You know this. Remember. There is life between the hits.

Again, this won't end a hit, nor is it a cure--simply a coping technique. I think of CH hits as if they were storms. There's nothing I can do about them, so I've learned to get through them as best I can. Learning to cope has allowed me to build a crude little shelter out of burlap and sticks where "I" can hide from the worst of the weather.

Talk to Charlie about "Dr. Wright's Circulatory Technique" as well.

Best wishes,

George