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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Clusterhead Supporter in Ohio
        
(Message started by: Head_Monster on Oct 22^nd, 2004, 5:15pm)

Title: Clusterhead Supporter in Ohio
Post by Head_Monster on Oct 22^nd, 2004, 5:15pm

Hello all...

My husband is a newly diagnosed clusterhead here in Northeast Ohio. This message board and website have been a life saver for us (especially me). After two visits to the ER in less than a week and every other day visits to the doctor for injections of Toradol, a Medrol Dosepak and the introduction of Topamax and Relpax (new med like Imitrex) I am hoping this cycle ends real soon. Thank god for a good GP who is open for suggestions (I printed a bunch of stuff from here and presented it to her), today has been the best head day in four weeks (shhhhh....). I'm afraid to say anything as it seems to "flare up" around 7 to 9 PM every night. The only thing I fear this evening is the fact that he has no Relpax left. Apparently, you can only take 2 tablets in a 24 hour period and since she injected him with the Toradol today she said he "should be okay" until tomorrow and then she will call in an RX if needed. I sure hope she is right! Just having the Relpax on hand keep me sane... I don't know how much more of these he or I can handle. He has had multiple major surgeries in the past and is now nearly four weeks out from the onset of shingles and he said these cluster headaches or "suicide headaches", as he calls them, are the worst of the worst as far as pain is concerned. I watch him roll around on the floor holding his head in tears and I feel totally helpless. The doctor is thinking that the shingles brought this cluster episode on. Who knows? [smiley=huh.gif] He is very lucky in the fact that he has only had two of these episodes over the past ten years and the "episodes" were very brief. This is the worst and longest and I hope it is on it's way outta here! Oh well... I just want to thank everyone involved for all of the useful information and support. I'm going to be a frequent flyer on this site but hopefully I'll have good news in the days to come and I can tell you life is back to "normal" again. [smiley=wave.gif]

Title: Re: Clusterhead Supporter in Ohio
Post by Valerie on Oct 22^nd, 2004, 5:30pm

WELCOME!

Your husband is lucky to have you supporting him. It's a difficult diagnosis to deal with. You've found the right place for a lot of information and support. There is also a supporters board. Sounds like you're on the right track, keep reading and I certainly hope the nightmare ends soon!!

Valerie

Title: Re: Clusterhead Supporter in Ohio
Post by kcorrigan on Oct 22^nd, 2004, 5:54pm

I, too, am in Northeast Ohio. If you ever want to chat, feel free to email me or call me. All of my info can be found on my website listed at the bottom of the page.

Today is my first non-attack day in almost 2 weeks. I still am feeling blue and tired, but hopefully the meds are doing what they're supposed to be doing.

I'm starting to get back on track after being couped up in the house for the past week, afraid to go out other than to the DR or Post Office. I even cancelled my work tonight to try to get some rest. Hopefully I can make it tomorrow night.

Anyway, good luck to you and your hubbie. Here's to PF days in the future and to sleep-filled nights.

Title: Re: Clusterhead Supporter in Ohio
Post by Head_Monster on Oct 22^nd, 2004, 10:04pm

Katie:

It is too weird that today was also my husband's first CH-free day, being that we all live in northeast Ohio. Wonder if the weather, barometer, etc. have anything to do with this? It just seems odd and you just wonder what the hell brings this stuff on. It sounds as though his "cycle" has been pretty close to the same as yours. I really hate to speak too soon as it's only nearing 10 PM and, although he's sleeping already (this is a good thing) I'm just keeping my fingers crossed that he makes it through til the morning and then has a good day tomorrow. These past few weeks have left us both worn out and the Topamax seems to make him tired but I'm sure he'd rather be tired than have his head in the explosion mode. There were a few nights recently that he was ready to blow his head off... This whole thing has left me a nervous wreck and "walking on eggshells" just for fear of the devil returning and then that plays on your mind as well... Anyway, blah blah blah.... I am getting longwinded and I better just hit the sack while the timing is right cause ya never know what the night will bring...

Katie - I hope you remain CH-free forever and thanks for your thoughts. Have a wonderful weekend!!

Nancy :)

Title: Re: Clusterhead Supporter in Ohio
Post by kcorrigan on Oct 23^rd, 2004, 11:49am

Well, so much for PF. Today I got hit - and hard. I'm trying to get out of work again tonight. I haven't even worked since last Friday - I'm gonna end up in the poor house if this keeps up, lol.

I'm so exhausted! I'm off to try to get some rest so that my 4-5 doesn't shoot back up to a 9-10 again.

Have a good one.

~ K

Title: Re: Clusterhead Supporter in Ohio
Post by miapet on Oct 24^th, 2004, 11:34am

Nancy,
Welcome to the board . . .hope your hubby is still doing better (Katie, hope you are back on the better road too *g*)
Anyway, great job of printing and taking things to the doc. We (supporters) have to be very strong advocates for sufferers. When they are getting slammed, it's so hard for them to advocate for themselves (near impossible?) . . .One question (hope you don't need it *G*) . .have you tried oxygen? The oxygen link has great info, and it works for a lot of people, to abort a h/a. Just an idea, as it's the least invasive *smiles*.

Take care of yourself, and enjoy every p/f moment *smiles*
*positive light and energy*
miapet (supporter)

Title: Re: Clusterhead Supporter in Ohio
Post by Head_Monster on Oct 24^th, 2004, 12:30pm

Miapet:

Thanks for your support and encouragement. I did mention the oxygen to the doctor but I think she was a little hesitant and wanted to explore the other avenues first as my husband and I are both smokers and she might be afraid we'd blow the house up or something. Today is his third cluster-free day so far and I'm keeping my fingers crossed. What really makes me angry is the ignorance shown by the ER doc on his second trip to the ER last week. The first trip we had a female doctor who seemed knowledgeable in that she had him on O2 and medicated within ten minutes upon arrival. The second trip we had a cocky young doctor who first asked "are you on drugs, are you drunk?" and then let my husband lay there rolling around in pain and stated "I think he's over-reacting"... I immediately said "apparently you don't know what a cluster headache is". >:( That pissed him off. He also said my husband was being a "knuckle-head" and "if he was my 17 year old son I'd slap him in the face"... I told them to at least get the O2 on him as I have read this can sometimes abort the attack but they did not listen to me. After him laying in the ER for 3-1/2 hours with no O2 and waiting for medication the cluster had subsided and I was ready to tear the ER up. I was so upset. When I started raising hell they called 3 security guards "to protect their staff"... I weigh a whopping 125 pounds - what the heck did they need protection for? It's a shame that we couldn't get a nurse or doctor to do anything for him in 3-1/2 hours but within fifteen seconds they had 3 security guards there. Talk about a joke! Since my hubby came in by rescue squad all he had on was his boxer shorts and - guess what - after the 3-1/2 hour wait with no help whatsoever I told him "let's go" and wrapped him up in one of their blankets so we could leave. While we were on our way out walking down the hall one of the keystone cops "Barney, Andy and Gomer" said "what are gonna do, steal our blanket?" I pulled the blanket off my husband, threw it on the floor and he proceeded out through the ER, waiting room, etc. in nothing but his boxer shorts through the parking lot in the 40 degree rain and we got the hell out of their. I also failed to mention that in the midst of his 3-1/2 hour wait not even one person stopped in to see if he needed anything. He needed to take a leak and the bathroom was down a long hallway. He could not walk that far so I went to try to signal someone down for a urinal with no luck and when I went back into his room he was laying on the floor (he had fallen trying to get out of the bed) and he had a big old "goose egg" on his head. Since this incident the hospital has called three or four times trying to "kiss butt". I think they are afraid of a lawsuit. I work for a physician and once they found that out they are trying to do anything to make us happy. I don't want to sue anyone but just feel that no one should be treated this way. I have been a "basket case" since these clusters have started and I didn't need all this. We just wanted the care and compassion that anyone deserves - not to be humilated. I only told them not to send me a bill because they never did one thing for my husband other than "aggravate the cluster right out of him". Thank God for our GP - She has been wonderful through all of this and she says she is open for anything I can get her through this website or the OUCH website to try to get him through this all. What really sucks though is that she is moving out of Ohio due to high malpractice costs (no wonder with doctors like that ER doc) and I just hope the guy who is replacing her will be as wonderful as she has been. I call her and she has me bring my husband right in. She has been a lifesaver! This website and all of the information I have obtained from you all has been a godsend for me and my husband as well. I am truly appreciative to all and I want you all to know that you are in my thoughts and prayers. I wouldn't wish this on my worst enemy!

Sorry but I am longwinded but it sure helps to talk to someone who can understand. I'm so sick of people saying "I get migraines and I know how they hurt" - or "are you sure you don't need glasses and are getting headaches from eyestrain"..... Just shut the heck up!!! You have NO IDEA of what a cluster headache is until you have seen your loved one go through this terrible thing!

I'll shut up now :-Xand go enjoy the pain-free time we can spend together. I hope it continues and, as I said, I hope the best for all of you....

Nancy :)

Title: Re: Clusterhead Supporter in Ohio
Post by Biker on Oct 24^th, 2004, 2:11pm

Hi Nancy,
Not many ER docs really know about CH. Alot of us have had bad experiences with those emergency rooms. Sorry to hear your experience sucked.
I also have been turned down for a perscription for oxygen. I contacted my local welding supply company, and now have 3 bottles of welders oxygen. My medium bottle will last about a month when using it every day, and cost about 12 bucks for a re-fill.
Not sure about the weather thing you mentioned. I am in West Virginia, but do brace for an attack when I see a front crossing the great lakes. I seem to have some trigger for CH when a low pressure front passes. If I see a large storm on the weather channel comming across Ohio, I make sure I have a good supply of oxygen, and take an extra verapamil.

Title: Re: Clusterhead Supporter in Ohio
Post by Head_Monster on Oct 24^th, 2004, 2:49pm

Biker:

Off the subject a little but where did you come up with the "Ride it like ya stole it"?... I just happen to have some Harley bumper stickers and window decals that say that...

Let me know - thanks!

Nancy ;;D