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        Supporter's Corner >> Supporter's Corner >> HEADACHES FROM HELL
        
(Message started by: RED on Sep 28^th, 2003, 1:32pm)

Title: HEADACHES FROM HELL
Post by RED on Sep 28^th, 2003, 1:32pm

:'( Hi, my name is Eleanor and an 42 years old. My husband Sean(40) suffers from chronic CH'S. I woke up this morning to moans in the basement. I came downstairs and my daughter Adriana(9) says, Daddy woke up with a headache. The moans were so intense, must be a bad one. I began to cry while my daughter went to get kleenex and wiped my tears. I empathised with her that I understand it's hard for her too. We have gone through years of hell, finally last year Sean went to see the best neurologist in Canada, Dr. Cooper. He prescribed Verapamil. For the past year his headaches were maintained, although he still has pressure, it doesn't get to the moaning stage. He has been getting them every day again1-2x. His Doctor increased his Verapamil. Hopefully it works although he'll really be lethargic now. I plan to go for Dissability for him as he's never going to be able to work again. Has anyone went for Dissability and what was the outcome. I plan to get a letter from the neurologist on Sean's behalf. Here's hopin, as I don't make enough money to support us 3. Sean's sleeping now, a break for him and I. What a horrible existance, I worry about his state of mind. He's not had a good few months. :( Thanks for listening! Not too many people really totally understand the agony of it all. RED(EL)

Title: Re: HEADACHES FROM HELL
Post by Jackie on Sep 28^th, 2003, 2:10pm

Hi Red,
I am married to a chronic clusterhead....and yes they are the headaches from hell.

Can you tell me exactly what you mean by , "for the last year his headaches were maintained"....
I ask this because chronics can hardly maintain pain free time for a week. What else have you all tried in the way of medications.....both preventatives and abortives.

I can't address your question about disability as I'm sure Canadian criteria is different. I know nothing about US disability either as it has never been a consideration.

I'm sorry that your husband is suffering and I know that it is difficult for you and your daughter too......
My advice is don't give up.....there are always better and pain free days ahead.

Good Luck,
Jacks 8)

Title: Re: HEADACHES FROM HELL
Post by RED on Sep 28^th, 2003, 2:23pm

Thanks for your response Jackie. When I said his headaches had been maintained, I meant the pressure is always there, especially with the change of pressure outside, but they didn't get to the point where he was pacing in the basement. Last summer he was having 5-6 a day for months, he wore his feet out pacing on cement floor 10 hrs a day. The moaners have returned and started in June. He has a prescription for Imitrex Nasal Spray which he takes at the onset of a CH, which does help only if he catches it on time as well you can only have 2 doses in 24hr period. Where are you from? I needed to talk to someone who can really sympathize with the nightmare of CH'S! Have a great day! My husband is still sleeping so we all get a break! EL

Title: Re: HEADACHES FROM HELL
Post by Jackie on Sep 28^th, 2003, 2:38pm

Red,
Imitrex injections work well and can usually knock the CH down within 5 to 15 minutes. There are other abortives that also work well. My husband takes Zomig.....it works very well for him and lasts for 6 to 8 hours. Has your husband tried oxygen....it is the #1 line of defense for many clusterheads. The side effects are nil and it can be used often. There are many other preventative meds. besides verapamil. Has he tried anything else? All the information on the prevent. meds. and the abortives are available here (buttons on the left) and on the OUCH website.....study and read. There is a wealth of information on dealing with CH. There are also lots of 'home remedies' that help.

My husband had been chronic for over 10 years. Believe me you can have a life. It takes hard work and there are lots of trials and errors but you can make it. Don't give up!

Hugs,
Jackie 8)

Oh.....we are in Indiana

Title: Re: HEADACHES FROM HELL
Post by RED on Sep 28^th, 2003, 2:49pm

Hi again! He has tried most everything other than oxygen. The Dr. said if the Verapamil didn't work they would try the oxygen next. He has been on all sorts of medication in the past 4-5 years, ie; Lithium, Amitriptyline, Inderoll, Nova-salmol Inhaler,Prednisone, Sansert, Fiorinal, Apo-Propranolol, Amerge, Gabapentin. The prednisone worked the best and we had a life for 6 months. The DR took him off as said it was not good to take longer than 6 months as it starts to do damage to the organs. I found this website a long time ago but never joined. I find I could use some support from people who know exactly what we're going through. We don't meet too many people who suffer from CH'S let alone know what they are. Thanks for your support. How old are you if you don't mind me asking. EL

Title: Re: HEADACHES FROM HELL
Post by cathy on Sep 28^th, 2003, 3:07pm

Hi Eleanor, Sorry to read about your husband Sean.....

Sadly as supporters we understand what your going through, thankfully my husband is episodic and for the few months it visits we hang tough and fight hard to maintain as normal an existence as is possible...Don't let the beast win!!

You have found yourself another family who will truley understand, support you when your down, cry your tears and laugh along with you, fight and make up but most of all a family that cares.

Sending Sean some PF vibes from across the pond and good luck with the diability let us know how you get on.

Cathy

Title: Re: HEADACHES FROM HELL
Post by Miss_Deleny on Sep 28^th, 2003, 4:13pm

Welcome Eleanor! Sorry you had to look for us but sure glad that you did find us!

I too am a supporter of a Chronic sufferer. It is very hard to see them in such pain but this site has been a blessing for both of us. There is so much information to the left and from other sufferers that I'm sure your husband can find a combination of meds that can work for him. Its a hard road to travel when you try something and it doesn't work then try something new .. kinda gets scarey .. always afraid that no matter what is tried next, nothing will work. But trust us, there is something out there .. just have to find the right combination for him.

Christopher, after quite a few trial and errors, is on verapamil as a preventive and imatrex injections as an abortive .. still waiting on the O2. When he starts getting a headache that he knows is not going away (not a shadow) he just injects himself and in about 10 minutes, the headache is aborted (9 out of 10 times).

This is a great place for you to come for any type of support you might need .. your husband, I believe, would really benefit from going to the general section and talking to others that have CH ... they are really informative and supportive to those with CH. They KNOW the pain, frustration and anger that one with CH goes through. Just knowing and talking to others that have it, is great mentally.

Wishing PFDaN's for your husband,
~April~

Title: Re: HEADACHES FROM HELL
Post by RED on Sep 28^th, 2003, 4:38pm

Thanks Cathy and April! I appreciate your response. I wish you the best as well with your husbands. What nasty headaches, although my husband says it's more of a face pain,behind the eye,ear and sinus. I can't believe there is no cure. The public needs to know more about these headaches ie, Larry King,W-5(in Canada), Oprah, Not Gerry Springer LOL, etc... Not too many people have heard of these headaches and how debilitating they are. I would have probably done myself in if I was suffering like he is. :( Well, take care, again thanks for the support! :) RED(Eleanor)

Title: Re: HEADACHES FROM HELL
Post by Jackie on Sep 28^th, 2003, 4:55pm

Hi Eleanor.......(me again... :P)
It's is important that your husband have both preventive medication AND abortive medication...or at least explore the possibilities of using both. Again this is all by trial and error as treatment of CH is usually very unique to the individual.

Examples:

Preventive: Verapamil, lithium, Topomax, Depokote, etc.

Abortive: Imitrex, Zomig, Maxalt, Amerge, Oxygen (the #l for most clusterheads), etc.

The prevent. meds are supposed to keep the sufferer from getting CH. The abort. meds are to knock a HA out when they break through.

Hope this helps.

Hugs,
Jacks 8)

Title: Re: HEADACHES FROM HELL
Post by RED on Sep 28^th, 2003, 6:11pm

Hi! He is taking Verapamil for preventative and Imitrex Nasal Spray for Abortive, the nasal spray does abort the headache if he does it in time. Also can only use Imitrex Nasal Spray 2x/24hr. He has almost tried the whole medication route. For now he's only getting one a day, lets hope the increase in Verapimal will do the trick. What really sucks is having no energy due to his blood pressure which is very low. Thanks for the support, hope all gets better for you as well. EL

Title: Re: HEADACHES FROM HELL
Post by ave on Sep 29^th, 2003, 2:33am

Red, that is why it is imperative he try and get Oxygen!
For many of us it works in knocking the demon of its feet.

He might even get away with lower dosages of Vera (better for his bp).

If the doc does prescribe Oxygen, be sure to check out the information on the left first (rate of O2 flow, mask, etc.) and refuse to accept stopping the Vera if that is suggested.

It is not the winner but the Vera/O2 combo is one of the best.

Please, help your husband and print out all the info, under the buttons left AND at the OUCH website (reference library).

Don't let shyness of a doctor prolong his agonies.

Good luck, Ave

Title: Re: HEADACHES FROM HELL
Post by Margi on Sep 29^th, 2003, 8:30am

Hi Eleanor and welcome.

Sorry to hear that you're both going through this. You've gotten some excellent advice here though, and that is to do whatever it takes to get him some oxygen.

You say his b/p is low - that's very scary that they've got him on verapamil, then, because it lowers blood pressure!! Does his neuro realize how low his pressure is? Please follow up on this TODAY, Eleanor, that can be life threatening!

I'm in Canada, too, (Calgary) and I know a little bit about disability claims as I administer our benefits program here at work. As Jackie said, though, it's never been a problem for my hubby either - he's always worked in jobs that he can find some private time to suffer through his attacks. I highly doubt that cluster headaches are recognized as a debilitating disease here yet, but you would have to work with your neurologist to get him to declare your husband unfit/unable to work. If you have a benefit plan, you can file a claim for him for short-term or long-term disability. If you're not on a plan, you would have to check with your provincial health care system (i.e. Blue Cross) and see what they would cover him for. But, if he's only having one attack a day, though, is that not manageable enough for him to be able to work? Or are there other conditions that prevent him from being able?
I would think your first step would be to involve the neuro - he/she will be able to point you in the right direction with regard to disability.

Title: Re: HEADACHES FROM HELL
Post by Prense on Sep 29^th, 2003, 6:22pm

I agree whole heartedly that a CH attack can be completely disabling. There are quite a few of us who have tried numerous medications for preventatives prior to getting that right med (combo)/dosage just right. That takes time! Of course, throughout that time, you still suffer tremendously.

You said your husband had some success with trex NS...has he attempted the injections? I take one at work as soon as the beast rears its ugly head without batting an eyelash and get right back to work. In the time it takes me to stop my leg from bleeding and pull my pants back up, the HA is starting to fade. By the time I compose myself, the HA is gone. (It's like taking a 10 minute, ummmmm....dump) ;D Read the imitrex tip to the left to find out how he can get up to 6 doses a day and still stay under the 12mg limit with the injections.

I am chronic (10 years) and so far completely unsuccessful with meds as a preventative. Trex has been a blessing! I will aggressively pursue a preventative that works for me, and as long as trex is working, I will not consider any form of disability.

I wish you and Sean the best!

Chris

Title: Re: HEADACHES FROM HELL
Post by RED on Sep 29^th, 2003, 9:46pm

Thanks for taking the time to tell me abit of your story. Our nightmare started 5 years ago, first we thought it was sinus infections, then he had surgery on his nose, then had a lobotomy,LOL, until we figured out by chance. I stumbled onto this website and as soon as I started reading I was convinced Sean had CH'S. I felt right at home as we're all experiencing the same bad nightmare. Where are you from? I'm from London, Canada. So far, the Imitrex is a blessing to Sean as well, except for the ones he wakes up with. Those seem to be the worst. He's only had 1 today. Almost time to call the pharmacy to stock up on the Imitrex. :) Wishing you many pain-free day's Chris! :)

Title: Re: HEADACHES FROM HELL
Post by RED on Sep 29^th, 2003, 9:56pm

GOOD NIGHT ALL, HERE'S TO A PEACEFUL SLEEP! RED

Title: Re: HEADACHES FROM HELL
Post by Prense on Sep 30^th, 2003, 5:12pm

on 09/29/03 at 21:46:32, RED wrote:

Where are you from?

I am from Clovis, New Mexico... Definately pursue the O2, if it works, it can reduce the need for imitrex. That said, do not let your guard down...keep a GOOD stock of trex on hand at all times. ;D

Keep pursuing a preventative as well. If he is still getting night time attacks, the preventative is not working. Doasage increase, added med, different med, etc... I found out the hard way. No one will care about his well-being more than him. Stay proactive and things will improve. :)

Be well!
Chris

Title: Re: HEADACHES FROM HELL
Post by RED on Oct 1^st, 2003, 8:13am

Hi Chris! Thanks for your reply. New Mexico, WOW! That's very far away. I'm sure the weather is better there than here in London, Canada. I hate the cold. Brrrrrrrrrrr! So far Sean is averaging 1 CH a day so it seems to be manageable for now thanks to TREX. The Oxygen sound like a good option. That will be our next avenue if things get out of control. Last summer he was having 5 Ch's a day after the Dr. took him off prednisone. He was pacing for 6-8 hrs a day. That's when he started on Verapamil which did wonders. I guess he had a bad neuro who was not updated and did not prescribe Verapamil. We could have saved a couple of years of agony. Grrrrrrrrr! I hope you have a pain free day, take care, and please send some sunshine our way! :) Take Care, EL(RED) P.S. How do you change what's on the side of my message, now it says I Love ya, you have Tweety Bird on yours. I'm new at this! How old are you, just curious!

Title: Re: HEADACHES FROM HELL
Post by Prense on Oct 1^st, 2003, 6:29pm

Click on my name to the left side of my post and it will answer some of your questions. ;D As far as changing your "profile", go to the top of the page and click "Profile". From there it is kinda self-explanatory. Any pictures that you want displayed must be located somewhere on the internet.

This site: http://photoshop.superdownloads.net

allows you to upload pictures so that you can link to them from things like this message board.

Hope this helps!

Title: Re: HEADACHES FROM HELL
Post by RED on Oct 2^nd, 2003, 8:52am

Thanks Chris! Thanks for the help. It snowed this morning!!!!! We missed a season(fall). The leaves haven't even had a chance to change colour. Winter is getting longer and longer & less tolerable every year. Personally I do not like the cold. All of what I enjoy doing are summertime activities. (swimming, camping, beach,theme parks(rollercoasters),canoeing. How have your CH'S been lately. I can't imagine going through that kind of pain every day. :( It must be frustrating as to why they don't have more answers. Most people have no idea of the suffering one goes through with a CH! I had never heard of them until I stumbled upon this website. Thank God I did. Unless you have seen a CH attack, it's mind blowing how one can endure so much pain. I sympathize with all CH sufferers from the bottom of my heart. It's the hardest thing to watch and hear as the moans sound so horrific. What do you do to stay sane? I thought I asked you to send some sunshine, NOT SNOW! :) Well, have a pain free day! Take Care, EL ;) ;)

Title: Re: HEADACHES FROM HELL
Post by Prense on Oct 2^nd, 2003, 8:14pm

on 10/02/03 at 08:52:58, RED wrote:

How have your CH'S been lately. I can't imagine going through that kind of pain every day.

At least now when I get hit, I have something to deal with it. Trex injections have been a blessing! I just started using O2 as well...there was a learning curve with that. :P I think I got it figured out now though. I still get hit fairly frequently, and my preventative meds will not be changed again until I see a HA specialist at the end of this month.

on 10/02/03 at 08:52:58, RED wrote:

It must be frustrating as to why they don't have more answers.

It is not frustrating at all. I just accept the fact that there is no "cure" for CH at this time. What frustrates me though is dealing with ignorant or unsympathetic docs. Additionally, having to explain why I need more than 18 injections of Imitrex in one month can be a little frustrating.

on 10/02/03 at 08:52:58, RED wrote:

What do you do to stay sane?

I don't worry about things I cannot control. Also, for every minute the beast takes, I take two back.

Let us know how Sean is doing, ok?

Best wishes for both of you!

Chris

Title: Re: HEADACHES FROM HELL
Post by Miss_Deleny on Oct 3^rd, 2003, 6:49am

on 10/02/03 at 08:52:58, RED wrote:

What do you do to stay sane?

Having a great supporter(s) helps alot of these CH sufferers get by. Knowing that the HA won't kill you and knowing that at some point the pain will either subside or end is a big help too.

How is Sean doing? Has he been back to the Doc? Please keep us informed as to how he is.

~April~

Title: Re: HEADACHES FROM HELL
Post by RED on Oct 3^rd, 2003, 8:11am

Hi Chris! Sounds like you have the beast under control. Way to go! Sean is still averaging one CH a day and overall can get relief from his Imitrex Nasal Spray. Well, have a great weekend and I'll say good-bye for now! RED

Title: Re: HEADACHES FROM HELL
Post by RED on Oct 3^rd, 2003, 8:20am

Hi April! Sean is doing okay, the Dr. increased his Verapamil a week ago, he's still averaging one CH a day! The Imitrex Nasal Spray seems to abort it most of the time. We just take one day at a time. Thanks for your e-mail and support. It does help. Do you have any children? I have one daughter 9yrs old. Where are you from. I'm from London,Ontario,Canada! Have an awesome weekend. Hope your husband is feeling good. Take Care, EL(RED)

Title: Re: HEADACHES FROM HELL
Post by ylenia on Oct 3^rd, 2003, 10:21am

Hi Eleanor, so sorry for your husband :'( :'(
My sister-in-law is a chronic clusterhead... I understand your pain, you must be strong as your husband is with the beast. Wishing you pain free days and nights!!

Ylenia, Italy ;)

Title: Re: HEADACHES FROM HELL
Post by Margi on Oct 3^rd, 2003, 10:41am

Ylenia, welcome - :) so nice to see you here!! Our best wishes to Zaira and your family!

And, Red, one more time - PLEASE be careful with your hubby's verapamil!!! It's a med that LOWERS blood pressure - and if he's already low as you said in an earlier post, this is VERY dangerous to be increasing the dose. What dose is he at now? PLEASE PLEASE PLEASE check with your doctor TODAY and look into getting him some oxygen as an abortive!!! Get the doctor to check his blood pressure (or take him to Shoppers Drug Mart and even measure it there...sometimes those machines aren't completely accurate, but they WILL tell you if he's dangerously low, at least! Don't mess with low blood pressure!) :o

Also, I noticed you often ask people where they're from. Just so you know, if you click on their name, a profile comes up that quite often lists their location. Or, we have a Where We Live button on the left here that lists folks by location.