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(Message started by: PETE_MARIAH on Sep 7^th, 2003, 1:54pm)

Title: Bad Start
Post by PETE_MARIAH on Sep 7^th, 2003, 1:54pm

Okay we got off to a bad start.

Can we start over?...

Since we are newbies I want to give some background.

My husband suffers from CH and migraines. Some doctors have told him that it was triggered by exposure to depleted uranium in the Army. We still do not know. He has seen 4 Gps and 7 neuros and is currently seeing a nuero in Houston, TX who has been the most helpful so far. He has tried many meds, I don't even know the names of all. Triptans have not helped him. There is one combo that helped decrease the severity and frequency and that was sansert, zyprexa, and topomax. He had to stop sansert for a while due to the problems getting the rx filled and he kept taking the other two. We quickly realized it was the sansert that was helping because the beast started visiting daily; stronger and stronger each time. The latest developement really scares us. Last week he starting having 3 or 4 ch a day (and worse than usual at that) and he was almost completely blind at the same time. Three nights in a row we spent in the ER for nothing. They refused to give him a cat scan so his GP is going to do one next week. Then yesterday we drove 4 hrs to his neuro to get some sansert. His dr has been making his own version of sansert using the same compound and we paid $50 for a 30 day supply. Hopefully, that will start to decrease again in a few days. I hope, I hope, I hope.

Also, everyone was right about the narcotics. The Actiq worked great for about 3 headaches and then after that the beast just got stronger and it didn't work anymore.

My husband has turned into a bit of an anti-social because of the ha's so I will probably post more often than he, at first. I am trying to get my husband to talk to more fellow sufferers in the hope that it will help him with the stress of this terrible affliction. He tries to talk to me about it and I try to be supportive but I really have no clue. All I have ever had is regualar tension headaches and as hard as I try I will probably never fully understand what he goes through. I want him to be able to talk to people that do understand and then maybe he won't feel so alone.

He is really depressed right now because his dr told him he can't work anymore. He has been out of work for 3 months now. He is only 29 and he has plans to do so much. He wants to get a degree in Biology and become a field biologist but, most days he can't even leave the apartment.

Right now, I think he is close to the end of his rope. Does this ever get easier? Will these damn ha's ever stop? What can I do to help him?

Mariah (Pete's wife)

Title: Re: Bad Start
Post by taraann on Sep 7^th, 2003, 2:02pm

Oh Mariah I'm so sorry that your husband is having such a terrible time with the CH's. I get both CH's and Migraines. A couple weeks ago I also lost sight in my right eye, also had weakness on my right side, had trouble speaking, and my face on my right side felt cold. They did a CAT scan and everything looked fine and my doc told me he thinks i had a severe Migraine going on at the same time as a CH and sometimes migraines cause temp vision loss...as for the other symptoms I experienced he chocked it up to just a weird reaction to severe pain. I know those can all be signs of a stroke so I do hope they do a CAT soon just to rule that out for him. It sucks to have something scary like that happen on top of being in severe pain. I hope he posts soon so he can have some of this TREMENDOUS support and info for himself too. Hang in there you are a wonderful wife for being so supportive and understanding.

Title: Re: Bad Start
Post by UnsolvedEquation on Sep 7^th, 2003, 2:15pm

Sorry to hear about your husband. The beast brings us all down and at some time or another...we too feel like we're at the end of our rope. All we can do is learn to cope. Trying to find the right meds or combo of meds can really be frustrating and a long drawn out process. Trial and error is the really only way to find out. What works for some may not work for others. Being able to have someone to talk to is a real blessing. Your husband might feel better talking to some people who know exactly what he's going through ( like right here). Maybe a psychiatrist might be the way to go. If he's not into doing either right now ... plz do your best to listen...it means alot to have someone there for support. Don't ever think that what he's going through "is not that bad", because it is a devastating pain that can affect you physically and psychologically. Becoming a bit withdrawn and anti-social is probably a pretty normal thing for sufferers to go through. We like to be where we feel safest ( at home )....but at the same time...it's good to get out and interact with others to give us a sense of normalicay.
My suggestion is: don't push him to do anything he doesn't want to do. Give him some time. And most of all...Be there for him...but don't crowd him .
Goodluck and we hope to see him post sometime !
Best wishes
Unsolved

Title: Re: Bad Start
Post by stevegeebe on Sep 7^th, 2003, 2:17pm

Please, please, if you have not tried o2...get some.

It has worked for many here.

Good luck and my prayers are with you.

Steve G

What do you mean "Bad Start"...Forget it!

Title: Re: Bad Start
Post by OneEyeBlind on Sep 7^th, 2003, 2:21pm

Just hang in there. Getting the right combo platter going is what your hubby needs. He needs to figure out slowly but surly what works and doesn't work for him. I am an O2/Imitrex Injection lover. The O2 (used the correct way .. check the info button on the left ... cause if you don't use it right it will NEVER work !!!). The Imitrex injections gives lots of people here relief. Also, verapamil is used as a preventative. I don't have much experience with that since I have only had one cycle .... but you can bet ... if the beast comes a knocking I will be trying that !!!!!!!!!!!

Good luck to you and your husband. What you really need to do for him is give the meds a chance to work. Lots of people give up after a day or two because this is soooooooo painful. Keep with it ...... if it works great, if not ....... chuck it and ask for something new. Let us know as you try new things ... lots of people on this board have been through it all and can help.

Title: Re: Bad Start
Post by Prense on Sep 7^th, 2003, 2:38pm

on 09/07/03 at 13:54:48, PETE_MARIAH wrote:

The latest developement really scares us. Last week he starting having 3 or 4 ch a day (and worse than usual at that) and he was almost completely blind at the same time.

How long did the impaired vision last? Serious side effects to Topamax involve the eyes. If he's been on Topamax for a while though, I would guess that it didn't cause the vision problem. One other thing to consider...MS (from what I am told) can cause severe HAs as well as temporary paralysis which can involve any portion of the body (including eyes) to any degree. I would definately be concerned with the vision problem. I, for one, have never had such an experience while being attacked.

A friend of mine has MS, and he had a vision problem with it for about 2 weeks. He described it as looking through a pair of glasses that were smeared with vaseline. It only affected one eye.

It DOES get better, but as previously mentioned...finding the right med combo for CH can be extremely annoying and can take an eternity (seems like it anyway :P)

Best wishes!
Chris

Title: Re: Bad Start
Post by Hooter on Sep 7^th, 2003, 3:05pm

Hello Mariah and Pete

I am so glad you came back, and no worries about the bad start- mine was FAR worse, I was utterly rude and had a full scale with huge abuse online and message fight with Jonny and a few others when I came here and we're good friends now.

I am also glad in some ways that the narcotics aren't working because ultimately most sufferers here seem to have found that they progress upwards and upwards in strength as each successively fails to work any more, and are either left spaced out when not in pain, or detoxing and starting again. That's no way to live your life.

The best advice is available here, but each of us is different. I am, like Pete, a CH and migraine sufferer.I personally love the 02 route for CH as it feels so much more 'natural' and less harmful than some of the drugs. I also use Imigran (Imitrex) for the worst attacks. I keep a supply of Zomig which I use for the migraine and the lower level CH attacks and 'shadows' (that "shit, I'm brewing trouble here" feeling.
Personally I don't use preventives as I am episodic and they take time to work, by which time my cycle would probably be over anyway, but as advised above, many people have had great success with Verapimil.
This might just be the key to helping Pete get on with his life plans. Has to be worth investigating anyway.

Welcome to both of you. Hope you find what you are looking for here.

Wendy the Brit

Title: Re: Bad Start
Post by Miss_Deleny on Sep 7^th, 2003, 5:43pm

Welcome Pete and Mariah!

I am not a CH sufferer, but a supporter of one (Prense) so I can't tell you what meds would be best to try, only what meds Christopher tried and didn't work for him, but I'll let him relay those to you.

But what I can say, and I think its great for both of you, is to read, read, and read some more of everything that is in the links to the left. There is so much information there that can help you both!

I was like you, Mariah. I hated seeing Christopher in so much pain and didn't know what to do for him. When he found this site, I came on and started reading everything I could about CH so I would know, in the best way possible for me to know, what he was going through. It has helped out so much! Not only have I learned more about CH but this site has also brought us closer because I do understand what he is going through. Mind you, I will never "know" the pain he goes through, but I understand more now than I used to before finding CH.com!

So, I feel that the best way for you to help him is by becoming knowledgible about CH and just by being there for him! And I think that if he would/could start coming here, reading what others have written and/or talking to others that are also going through the same thing he is going through, it would help him by knowing that he is not alone anymore.

Wishing PFDaN's for everyone!
~April~

Title: Re: Bad Start
Post by badfly on Sep 7^th, 2003, 5:58pm

Welcome to the board

I am sorry Pete is having such a hard time of late. This is a terrible affliction, but keep pushing the docs to get Pete the reliefe he needs, and life will become bareable again. The O2 is a VERY good idea.

Wishing Pete PFDAN

Title: Re: Bad Start
Post by Opus on Sep 7^th, 2003, 6:14pm

Mariah,

Your off to a good start, do your best to get Pete on this board, A true CHer can't stand to stay away for too long. We are all anti-social when in cycle but everyone here knows the pain.

If you haven't found it yet there is a supporters corner that may help you specifically.

Check into the o2, it is used as a diagnose by some DR's as O2 only works on CH, other than a hangover. Make sure you check the o2 button on the left because the doc will try to give you the wrong amount.

Opus/Paul

Title: Re: Bad Start
Post by Linda T on Sep 7^th, 2003, 6:24pm

I'm sorry that things are so bad for Pete and you right now. But you are in the right place. Keep looking and reading. I agree that Pete's docs need to come up with the right "combo platter of drugs." Unfortunately, this can take some time so you have to be patient. It's not easy I know.

Many people here benefit from O2 and imitrex injections. Also you can read that many people benefit from lithium and verapamil. Maybe he's tried that already?

You will also find alot of "home remedies" here. Little tricks that people use to get through the attack (dance). My dance usually involves a hot shower. Some people like cold. Some like lots of caffeine. You'll find loads of interesting tips here. You just have to keep trying.

Good luck. and wishing you all PFDAN always, Linda T

Title: Re: Bad Start
Post by Opus on Sep 7^th, 2003, 7:19pm

I forgot my no med stop gaps,

First sleep propped up high or better yet sleep in a recliner. This reduces the chances of having a night CH.

Ice, black coffee and nicotine work great to reduce the pain.
I have to use coffee or Imitrex doesn't work well.

Here is a link for more home remedies.

http://www.clusterheadaches.org/resources/non_script_treat.htm

Opus/Paul

Title: Re: Bad Start
Post by cootie on Sep 7^th, 2003, 8:00pm

Hi PETE_MARIAH..........dam...........sounds like you guys are goin thru some heavy stuff rite now........I think a good support group would be the biggest help for you both.....and this is a good one for starters !!! Pam that's jus a small part of the 'group'

Title: Re: Bad Start
Post by jonny on Sep 7^th, 2003, 8:15pm

on 09/07/03 at 20:00:30, cootie wrote:

Pam that's jus a small part of the 'group'

More like "Pam that is a huge part of this family"

Im talking HUGE!!!

.....................................jonny

Title: Re: Bad Start
Post by Charlie on Sep 7^th, 2003, 9:32pm

Glad you stuck around.

You asked if it ever gets better. Yes. I have been pain free for 12 years. It disappeared when I was 45 and so far, so good. Others too have or have had very long remissions. There is some very iffy evidence that perhaps age is a factor. Still, CH can begin anytime.

Keep reading everything you can here and look into some of the ideas you'll find. There is nothing to lose.

I hope you looked into Simon's letter that is the best description of this horror for families, friends and employers. It's well worth copying.

http://www.ouch-uk.org/ch/note_colleagues.cfm

Good luck and let us know how it's going.

Charlie

Title: Re: Bad Start
Post by PETE_MARIAH on Sep 7^th, 2003, 9:33pm

Thanks for all the support guys...
Good news!! Pete has been PF for a few hours now. Looks like the Sansert is working. :)

Thanks again! PFDAN to all :-*

Mariah

Title: Re: Bad Start
Post by cootie on Sep 7^th, 2003, 9:43pm

Isn't sansert the med they stopped makeing and alot of people swore by it and said it WORKED for them really good? (I could be wrong) Cuz if so and this doc makes up his own version of it that also works......geeze......couldn't this guy be a god-send ? Seems alot of people have posted that were devastated it is no longer available. Pam that thinks other docs should know how to whip that stuff up also

Title: Re: Bad Start
Post by fubar on Sep 7^th, 2003, 10:54pm

Mariah...

Kudos to you for sticking with this bunch of nuts. You're getting tons of good advice above. If you haven't had Pete try Oxygen, you must get it. Be sure to follow, as best as you can, the instructions described on the oxygen page. It is beyond belief how such a simple, non-narcotic thing like Oxygen can relieve this horrible pain, but it's true.

Glad you're sticking around.

-Fu

Title: Re: Bad Start
Post by tsayswhy on Sep 7^th, 2003, 11:13pm

cootie: my neuro just put me on sansert been on for 4 days and i am going 48 hours pf :) but i am in canada. it is proscribe here only problem i am having is leg cramps but thats all right with me anything better them the beast. as to pete and mariah nice to see you posted again. hope pete is feeling better. tari

Title: Re: Bad Start
Post by Donna on Sep 8^th, 2003, 7:12am

Sansert was pulled from the market because it had some nasty consequences down the road. Some of us used it for a short time and quit because of its bad reputation.

If you read what has been tried and proven here, you will probably find the right combo for you.

Good luck and WELCOME.

And Mariah.........check out the Family Services Team on the OUCH site (check out the margin on the left). When you get to the site, click on Cluster Help, and then check out the rest of the site for for some more good info.

Title: Re: Bad Start
Post by Cooked Brain on Sep 8^th, 2003, 2:47pm

welcome and good luck!