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        Cluster Headache Help and Support >> Cluster Headache Specific >> Re: Desperation
        
(Message started by: Sean_C on Jan 6^th, 2006, 1:03am)

Title: Re: Desperation
Post by Sean_C on Jan 6^th, 2006, 1:03am

on 01/06/06 at 00:49:37, AllanP wrote:

I've had great neurologists, all very sympathetic. And i've had more pain specialists suggest I am just drug seeking.

on 01/06/06 at 00:49:37, AllanP wrote:

Has anyone tried Marijuiana for chronic pain for CH?

Sorry to hear about your battle with the beast but reefa isn't gonna help dude.

Look on the med page and some alternatives like kudzu might be an option but I'm no doc.

Cheers

Sean..............................

Title: Re: Desperation
Post by gobby on Jan 6^th, 2006, 1:03am

I'm sorry to hear of your situation Allan, most of us here know where your comming from. You said O2 hasn't worked for you, have you tried the "Clustermask" I personally don't use O2 at present, but I'm really thinking about it. Tons of people here have had great sucess with it and this mask.

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1136522828

I'm sure if you look around a little you can find a lot more info on it, or someone will probably be around shortly with it.

Hope this is some help. :(

Title: Re: Desperation
Post by FramCire on Jan 6^th, 2006, 1:06am

I suffer from depression to begin with and although my CH has not been nearly as bad as yours, my wife once told me that she wouldn't trade 1 day with me for anything no matter what it meant when I told her I wished I could just leave to make her life easier for her. If your love loves you, she probably wants to care for you, no matter how hard it is for you to understand.

No man or woman wants to be cared for by the love in their life but honestly, that is part of loving someone. Do not feel guilty for needing to be cared for. Just remind yourself that you would and will be ready to care for her if and when she needs to be cared for. Her knowing that you will be there for her and you knowing you can be there fro you hopfully will help you both emotionally get through this.

Anyway, now it's time for the knowledgable ones to bombard you with all the things that work for them and you to make sure you try them all. I have used all the triptans (injectable and dissolvable are the ones that work best), ultracet, and O2 seem to work best to abort a HA for me. Topamax and Verapomil are the drugs I am trying to end an episode. You should really try them at the doses recommended.

Good luck. If i can be of any help send me a message. I understand feeling useless. I had people covering for me for weeks during this cycle because I couldn't care for my kids (that's my job) until I decided I would force myself not to let this thing beat me. It hasn't been easy, but with the help of this site and great family I am making progress in finding ways to cope.

3 weeks PF. Congrats. Don't let the fear get to you. It is possible to go many many many months without another episode!!!! Best wishes.

Title: Re: Desperation
Post by zwibbs/Scott on Jan 6^th, 2006, 1:07am

Hey Alan. Never feel useless !! You did the best thing possible by coming to this message board. The suggestions that will be made will be great. I always thought that I was the only one suffering through these damn things, but through this board I realized I am one of many. It surprised me to no end. I have had these for 28 years off and on. I am no expert--but I've had results with certain meds in past cycles, then they didn't work on recent cycles. I feel confident that someone on this board will make a winning suggestion..my recent cycle it was prednisone and verapamil that are working--Just hang in there and remember--you're never alone !!!

Title: Re: Desperation
Post by E-Double on Jan 6^th, 2006, 1:16am

I totally hear ya!!!!!!

You know you are not alone and that we are here for ya!!!

I had a 3 week reprieve about a month ago and the dread that surfaced becaus eyou become accustomed to that familiar friend was something fierce.

Hope yours stay away. Mine came back but the break was nice. It was the first real break I've had in nearly 2 yrs.

Once you get over the anxiety life will be good.

Remember that it is what it is and to live.

Try not to live in fear though.

Best,

Eric

Title: Re: Desperation
Post by Cathi04 on Jan 6^th, 2006, 2:07am

Allan, that's why this place exists- to help one another cope with the agony that is CH.......PLEASE be sure to post-good, bad indifferent.!

A few things...

From what I've read, grass will only aggravate things. please dont try, others have! There are other alternatives that have enjoyed some success, Kudzu, for one.read all about alternatives....
Give 02 a second chance.the clustermaxs is helping many who had no use for 02 previously.
Allan, if I may ask a question?? If the tables were turned, would you give up on your wife?? I doubt it...remember to survive the tough parts, but your LIFE is what happens between hits! Make the most of them.together!
If it gets to be too much, and you wish to talk one-on-one, over on OUCH, you will find the family services team. There to help in any way- you simply have to ask.
Now, did I forget to say "welcome back"......sorry you need to be here, but so glad to have you! Pull up a chair and join in...........I think you'll like it here!

One thing I know to be a fact, Allan, CHers are the strongest people I know- bar none-and that includes YOU!

Hang on, and if your rope gets short.... heller-we'll catch you!

Cathi

Title: Re: Desperation
Post by zanychef on Jan 6^th, 2006, 2:21am

hey allan!
i find that smoking grass doesnt help the CH but does help with the anxiety (ch gets more intense)
have you thought about alternative therapies? kudzu seeds etc?
lots of good advice here
o2 might work again if delivered properly lots of people(myself included) swear by the clustermasx
read up on everything that has changed since you were last here :)
enjoy every pf moment ;;D ;;D
hoping that the beast gives you a long break
Ian

Title: Re: Desperation
Post by Jasmyn on Jan 6^th, 2006, 2:44am

Welcome back Allan.

We understand your frustrations, fear, depression and pain. We are here for you and each other so that none of us have to face this condition alone again.

Title: Re: Desperation
Post by BobG on Jan 6^th, 2006, 3:26am

Hey Allen, I remember you and your lady from the Vegas Convention. Do you still have your OUCH T-shirt with the misspelled "Oganization"?

Sorry to hear you're hurting so much.

Have you read through the threads on alternative treatments, RC seeds, shrooms, kudzu?

Title: Re: Desperation
Post by BarbaraD on Jan 6^th, 2006, 5:03am

Hi Allan,

I remember you also from Vegas. Wondered what happened to you.

Don't give up now.... I spent two years in the house before I found something to help me. I take Topamax at night and it's kept me (not pain free) fairly level. I also take Melatonin at night to get some rest. The O2 helps during the hits (with lots of black coffee).

Only pot I ever found to help was in Jamacia and couldn't bring it back to the states. Am going to start on the Kudzu today and see what it does. Might try that (get it at a health food store). It's been working for a lot of people.

Stick around here. There have been a lot of things come along since Vegas.

Glad to see you back although I wish it were under different circumstances.

Hugs BD

Title: Re: Desperation
Post by Bob P on Jan 6^th, 2006, 7:59am

Quote:

Hey Allen, I remember you and your lady from the Vegas Convention. Do you still have your OUCH T-shirt with the misspelled "Oganization"?

Hi Allen. Been a long time since Vegas. Sorry to hear things haven't been going well. Hope the current pain free weeks grow to years.

Still got my "Oganization" shirt. In fact, when I returned the mispelled shirts to the company, they threw them in their $3 shirt box in front of the store so I bought a half dozen of them back. Getting a little threadbare now but I still wear them.

http://www.clusterheadaches.com/vegas/images/P1010035.jpg
Allen and his sweetie in Vegas talking with lcbob. Kip, Dave and Riccardo in the background.

Title: Re: Desperation
Post by nani on Jan 6^th, 2006, 8:16am

Hi Allan... Welcome back...
www.clusterbusters,com

or...
real all the threads in this thread:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362

Sorry, but weed probably won't help, and it may make things worse.

pain free wishes, nani
(a former 5 year chronic)

Title: Re: Desperation
Post by mabus on Jan 9^th, 2006, 9:51pm

Glad to hear you've been PF for 3 wks. My latest bout ended about a month ago, and I agree, the fear of it returning is one of the worst aspects of the affliction. Of course, it's worse in cycle, but the anxiety and downright fear of the attacks is truly a daily obstacle to overcome.

Maybe next time it won't come back. I hope so for both of our sakes.

Title: Re: Desperation
Post by BlueMeanie on Jan 9^th, 2006, 11:16pm

I know it's gotta be tough worrying about another hit, but you should be glad of your recent PF days. Maybe you have ended your chronic phase and have become episodic. You didn't mention triptans. Imitrex, Zomig, Amerge etc.

Looks like the alternatives have become best choice for those that tripans don't work.

Vibes that you stay PF and please enjoy your PF times. Good luck.

Title: Re: Desperation
Post by Beastfodder on Jan 10^th, 2006, 4:23am

Alan

Wish grass could shift them.

It's not through lack of practice that I've come to this conclusion, but it might take the edge off if you have the inclination - but it's not pain relief. Yet to find any painkiller that works on these buggers and I've had a little experience.

Maxalt has shifted the odd headache - and taught me about rebounds. I sympathise with you over the presciption options available.

The one thing that has made a huge difference has been clusterbusters. Both as a preventative and abortive it's worked brilliantly for me and along with O2 is all I need.

Good luck

Title: Re: Desperation
Post by imnotbub on Jan 10^th, 2006, 9:27am

Alan,
Life is too short and full of bull shit to be worrying about the next HA you may or may not get. If it's gonna come, it's gonna come, sitting there waiting for it is just feeding it. Enjoy your pain free time. It's precious. Don't waste it worrying. Just be proactive. Get the O2, get some Red Bull, (I avoid meds, but that's me).
Kiss your wife, then kiss her again. You are a lucky man. If she loves you, and it sounds like she does, then she WANTS TO care for you. I'm jealous.
Wishing you many, many PF days and nights,
Steve

Title: Re: Desperation
Post by sandie99 on Jan 11^th, 2006, 3:02am

Allan,

I'm so sorry that the devil is giving you hard time. I'm so glad that you came here and that you've had PF time, it's precious thing to have.

The last time I had ch hit was in April 2005, but I recall the desperation, the fear and deep sadness I had very well. Ch has a way to get to you in many, many levels. But you came to the right place. Here you'll always have people around you who will understand exactly how you feel because they have felt it, lived it and are living it.

This time last year I was ready to say goodbye to life because of ch. I was desperate and didn't believe that I could have weeks, not to mention months without ch. When I didn't have ch attack, I was afraid to have one - I knew I'd have few during each day anyway. Then came the right med and the right dose and one PF day became a week and week turned a month and now it's been months.

So, recall, even in the darkest moment, that there IS hope. There ARE new meds, treatments and painkillers to try. Verpamil worked for me, I don't know what works for you, but something will. And you Ch family will always be there for you, always. :)

Wishing you lots of PF time,
Sanna

Title: Re: Desperation
Post by newbie5000 on Jan 14^th, 2006, 6:13am

hi, I`m new here, I`ve just had a few days ch, which is the first for two years I don`t know if this will help anyone but I have suffered them for the last 20yrs or so but about seven yrs ago I was told by a friend to go to an osteopath which I did well the headaches went away for 6 mnths then came back so I went back to osteo ch went away for 1 yr , then next time about 2 yrs. The osteo reckons it is my neck which is causing them which I seem to agree as they go for long periods of time after a visit or two, well they came back two days ago and I seen him today so I am hoping and praying... as even when theyre away you still feel frightened of what can come back. I also read something which says meatonin works for stab headaches (which I think is another name for ch)but Im not sure of this .I would say if any of you have a sore neck please try a good ostoepath It cost me £30 a time but I would gladly pay anything for them to go away. Also watch what some specialist`s give you as one gave me steriods and I ended up withmy bones brittle and I needed hip surgerey. I can only hope this helps.