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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> A Cry of Help For My Husband
        
(Message started by: LauraP on Aug 5^th, 2002, 11:01am)

Title: A Cry of Help For My Husband
Post by LauraP on Aug 5^th, 2002, 11:01am

Hello to you all.

My husband and I just recently found this website. And oh boy I'm glad we did! I have read a lot of informational conversations. He isn't much for being on the computer to chat. So it's up to me.

I have watched him suffer from these cluster headaches for almost 5 years. He's been to many doctors and has had many tests run (MRIs, CATscans, etc.) and everything comes back as "normal". It frustrates me because what I see in our house is not normal. He goes through what each and everyone of you describe. My heart pours out for him each time I watch him shed many tears and scream with intense pain - day or night, anytime of the year. In the past he's been prescribed Imitrex, Maltex (sp?), Verapamil, and Zomig. The Imitrex slowed his heart rate down and it was becoming too scary to use. The Maltex didn't do anything. Now he is on Verapamil (daily) and Zomig (just before the Beast hits). But it's getting to the point that he is has built a tolerance. And it's time to move onto something else. Along the way he has tried accupunture, herbal medicines and vitamins, and hypnosis. Nothing worked.

I feel the doctors don't have a true interest in trying to find something that works. They just simply prescribe the next available medicine and send him on his way. It would be nice to find a doctor that can honestly relate and work with us. At this point he is willing to try anything! I'm very interested the shrooms that I've been reading about. My question on that subject is, are these the same kind of shrooms that are eaten for "pleasure"? :) Is so, that's fine by me. If they work we are willing to give the process a try - legal or not.

Does anyone live in Montgomery County, Maryland, that can recommend a really good neuro? One that will work with him and have a concern and not just see him once and be willing to just call presciptions in.

My husband and I have been married 18 years. He is my very best friend and I just want to take this pain away. My apologies for this being so long, but I'm so happy that we have found all of you. I guess I feel that I needed to give everyone our background - not that it's much different from any of yours.

BTW - My husband is MD Rick. He was asking about the Botox. We are at that point. Because the medications are wearing him out.

Thank you all for being there. (My future messages won't be as lengthy. ;)
Warm regards,
Laura

Title: Re: A Cry of Help For My Husband
Post by ChristineL on Aug 5^th, 2002, 11:36am

Dear Laura,

So sorry to hear about your husbands pain and thank goodness he has such an understanding wife.

IMHO - I can only tell you that as far as support , besides this site, I have found that Headache Centers have the most knowledge and have the understanding of what the patient is going through. If you can find a good headache center, especially one connected to a teaching hospital, etc. then at least they have an idea of what you are going through. Dr. Alan Rappaport and the staff at the New England Center for Headaches in Stamford, Ct saved my life and put me in remission for 14 years. I have just recently gotten my headaches back and am going to try a new center through his reccomendation as I have moved and am not close to them anymore.

Best of luck and I hope your husbands cycle ends soon.

Chris

Title: Re: A Cry of Help For My Husband
Post by LauraP on Aug 5^th, 2002, 12:26pm

Christine,

Thanks so much for the advise. I would think that with living in the Washington DC metro area one of his neuro's would have suggested a headache center, such as GW University. But since they haven't I will research one of the headache centers on DC on my own.

In the meantime, I just went out and bought him some Magnesium and Potassium to take. I was reading where someone else was having good luck with them.

What did Dr. Rappaport do for you to put you in remission for so long? I mean 14 years - that's great! I'd like to see Rick go just 14 days.

Thanks again.
Laura

Title: Re: A Cry of Help For My Husband
Post by ChristineL on Aug 5^th, 2002, 12:43pm

Laura,

I am also trying the magnesium/postassium route. I should own stock in Chiquita!! I have been taking magnesium tablets and eating scores of bananas, avacado's and potatos. Isn't doing much so far but I just started.

I was chronic back in those days and of course went through all the drugs that were available back them. Some worked for a period of time and some did nothing. At the end I was giving myself Cafergot injections when a headache started plus Oxygen and the Headache Center was giving me ACTH injections once a week. I believe that is what put me in remission but who knows with these damn things. I am not sure if they are still making ACTH or still using it for CH's but its worth the call to ask. It may have just worked for me but ya never know! All I know is I had one last horrendous one and then none. Why they have started again out of the blue is the mystery of the day and now I have Dr.'s to educate all over again! I just got off the phone with the Dartmouth-Hitchcock Headache Center in NH and the first appointment available isn't until November!!

I need to tell you that not only did NE Center for Headaches help me to find relief but the support by their staff was the very best by far. Now that was many years ago but they made me truely feel like they understoodwhat I was going through and helped me tremendously with that understanding and care. I hope I find someone even half as compassionate. If not then I'll do the 5 hour drive to go back to them!

Chris

Title: Re: A Cry of Help For My Husband
Post by LauraP on Aug 5^th, 2002, 1:15pm

Chris,

You have given me quite a bit to go on. I'm going to track down a headache center in our area right now. The difference now is Rick will have more information on possible medications to discuss with the doctors - thanks to you and others on this website.

Hopefully the Magnesium and Potassium will do some good, even if it's just for a little while.

These stupid headaches really have a hold over our lives. I feel like we're always on the edge when we go out somewhere. Usually though, the headache hits before we get out the door. Or it'll hit just before dinner. It's nice when our daughter and I are able to have dinner with Rick. :)

I'll keep in touch and let you know how things are going.

Laura

Title: Re: A Cry of Help For My Husband
Post by ChristineL on Aug 5^th, 2002, 1:48pm

Don't let them have a hold over your lives!!!! I remember going out to dinner one night with my husband and some friends. I got a major one at dinner so I took some meds, went outside and stood in the pouring rain. Felt good too. You must keep going on in as normal a way as possible. Some of these folks here have had them for 30 years or more - you just have to learn to live with them. I know - easier said then done but we have to beat the beast!

Chris

Title: Re: A Cry of Help For My Husband
Post by steColor on Aug 5^th, 2002, 3:17pm

At this point he is willing to try anything! I'm very interested the shrooms that I've been reading about. My question on that subject is, are these the same kind of shrooms that are eaten for "pleasure"? :) Is so, that's fine by me. If they work we are willing to give the process a try - legal or not.

Hi PaulP and MD Rick,

Welcome to the board !!
To answer your question on the shrooms, your assumption is correct. There is tons to read about this subject on this page, and almost all the other pages in the archives. This therapy has helped many folks as well as me too ;D. I am very, very glad to have found this treatment and not have to go the mindboggling meds route. I plan on returning to this alternative treatment when I need to. So please read on and come back with any questions that may arise. There are many wonderful folks on here willing to help.

Good Luck and PFDAN!
STEC

Title: And here the links STEC forgot :-)
Post by Ueli on Aug 5^th, 2002, 4:39pm

You'll find (almost) everything about shrooms at:
http://www.a-dzign.com/shrooms/

The links there to all shroom posts on CH.com:
http://www.a-dzign.com/shrooms/2002.htm
http://www.a-dzign.com/shrooms/2001.htm
http://www.a-dzign.com/shrooms/2000.htm

PFNADs
Ueli

Title: Re: A Cry of Help For My Husband
Post by Kanga_Kid on Aug 5^th, 2002, 10:52pm

Hi Laura - You and my wife seem to be in the same boat. I have found a doc. in the Philly area who has seemed to turn things around for me. If you are interested shoot me an e-mail and I will give you all of the info. OH, He also gets cluster headaches.

Title: Re: A Cry of Help For My Husband
Post by rick on Aug 6^th, 2002, 12:44am

Laura,

Here are some links that will help:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1013709016

http://www.erowid.org/plants/mushrooms/mushrooms_medical1.shtml

http://www.mycotopia.net/teks/scgg.html

http://www.fanaticus.com/index.htm

http://www.lilshopofspores.com/

http://www.sporeworks.com/

Let us know if you have any more questions.

Peace,

-Rick

Title: Re: A Cry of Help For My Husband
Post by LauraP on Aug 6^th, 2002, 8:30am

Thank you all so much for your websites and comments. It really is so nice to see that there are actually people out there that understand and can relate! I'm going to share every single one of these websites with Rick tonight and we're gonna get started on those shrooms ASAP.

He started taking the Magnesium and Potassium last night. So we'll see how the next couple of days go. I'd like to see him get off of so much medication. And I'm sure he'd like it even better.

Kanga_kid > I'd be very interested in your doctor's information. He's not that far from us. Thanks.

Cheers!
Laura ;)

Title: Re: A Cry of Help For My Husband
Post by NotH20 on Aug 6^th, 2002, 10:55am

Laura - also check out the OUCH site for a list of recommended docs. Maybe there is one in your area.

You sound like a wonderful supporter - one that is going the extra mile. I too have a wonderful supporter and I know how comforting it is. The beast is bad, but the kindness and love that my supporter shows me makes the beast just melt away! Keep up the good work Laura - you supporters are angels to us ch'ers.

Good luck to your hubby!

NotH20

Title: Re: A Cry of Help For My Husband
Post by LauraP on Aug 6^th, 2002, 12:30pm

NotH20,

When the OUCH page first comes up there's a globe of the world. But I'm not able to open the USA portion. Did you have that problem also? So I went to the drop down menu for recommended doctors and found one doctor in Maryland. I'm going to check him out and let you know what happens. Thanks for the tip.

He and I support each other equally. And I know if I was going through what he goes through he'd do the same for me.

I only wish that Beast would melt away and never return. Who knows maybe one day.

Thanks again.
Laura

Title: Re: A Cry of Help For My Husband
Post by NotH20 on Aug 6^th, 2002, 1:08pm

Laura - I'm having visions of the Wicked Witch melting in The Wizard of Oz :o

There are two docs on the OUCH site in Maryland. I'm not sure if either are close to you:

Fred Cantor
Wheaton

Dr. Alan Genut
Towson

Hope this is helpful....

NotH20

Title: Re: A Cry of Help For My Husband
Post by LauraP on Aug 6^th, 2002, 1:16pm

NotH20,

That's a perfect vision!!

You're right, there are two doctors. I should have clarified myself - I found one that was fairly close to where we live. (I think faster than I write). :P

Laura

Title: Re: A Cry of Help For My Husband
Post by pheonix on Aug 18^th, 2002, 5:50pm

hello laura my name is peter and i live in the uk, i have had ch's for 22 yrs so know what is happening, you are doing the best for him just by being thier for him, i have been chronic for last 6 yrs allmost daily attacks could not have got this far without my wife's help and support. keep plugging away. prendescone steroids help me but can only use short term a course lasts 6 weeks starting with 6x5mg tabs twice a day for 1 wk then reduce by 1 tab per dose each wk down to nothing also on verapamil 160 mg 3x a day watch out for bad cramps in legs quinine sorts that out. best of luck to you both and stay strong for him. xx

Title: Re: A Cry of Help For My Husband
Post by Dave_M on Aug 24^th, 2002, 12:33am

Hi Laura:
I'm a newbie so this may a bit late, BUT- I tried THC type remedies (read:shrooms, pot, etc.) but I found out that these all hallucenigens and will AMPLIFY the problem, i.e. a stoned headache. In a KIP10 emergency I will hop on a bicycle and ride as hard as I can. This will sometimes bring the pain down to a 3 or 4. A treadmill can work, too. You're a sweetie-hang in there.

Title: Re: A Cry of Help For My Husband
Post by tommyD on Aug 24^th, 2002, 8:00am

THC, the active ingredient in marijuana, has been found by most clusterheads to have no efffect on CH, or to worsen or trigger an attack.

Shrooms are not related to "THC-type remedies." The active ingredients are psilocin and psilocybin, and shrooms work very well for clusters. At least 75 percent of those who tried it found significant relief. Don't know if anyone has found shrooms to make CH worse, though having an attack while dosing can be a distressing experience.

Here are some links:
http://www.a-dzign.com/shrooms/
http://www.a-dzign.com/shrooms/2002.htm
or look down the medications section of this message board for recent discussions.

Dave_M - A few clusterheads here are actively researching the use of indole-ring hallucinogens (psilocin, LSD and related compounds) for cluster headaches. We're especially interested in hearing about reported failures of the shroom therapy. We'd appreciate it if you could give us the details on your attempt: how much you took, if you were taking any other medications... whatever you can remember.

And yes, intense aerobic exercise can abort an attack for many. And a stationary bike is recommended over sprinting around the block in your pyjamas, but any way you can increase the O2 in your blood can help.

-tommyD

Title: Re: A Cry of Help For My Husband
Post by sam on Aug 26^th, 2002, 8:42pm

on 08/05/02 at 22:52:04, Kanga_Kid wrote:

Title: Re: A Cry of Help For My Husband
Post by LauraL on Aug 27^th, 2002, 8:15am

Hi Laura, I am also Laura, and I just started using Maxalt and posted an updated yesterday, not sure you saw it, so here's an extract

Went to doc on Friday & took everything I printed from the site. She phoned Neurologist who suggested following:
Maxalt (10mg risatriptan wafers which you put under your tongue at onset of an attack), Panafcort (according to Swen's advice but little lower dose - suppose me being female, but with large dose reducing over weeks) & oxygen.

Friday afternoon when attack started I took the maxalt, and within app. 15 minutes headache was gone. I didn't have oxygen yet then. I also had no real side effects, which had me real nervous before! I had this weird heavy feeling, and were a bit more relaxed, but had I been at work, I would have been able to carry on working (computers & accounting by the way). So yeah, real pleased and relieved.

Laura