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Topic: Desperation has set in! Please Help (Read 1782 times) |
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athos
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Desperation has set in! Please Help
« on: Jan 19th, 2003, 3:55pm » |
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It has been ahwile since I have posted.
I have been a cluster suffer for 16 years. They have been increasingly getting worse. For a long time they have been clinically chronic 3-4 a month. With in the lase month they have increased to 4-5 times a week and I am losing my mind.
I am on topamx right now and they just put me on prednizone. I feel like I might as well be taking m&m's.
I am a grown man of 34(who looks 40) who sits and cowers in the corner like baby crying his eyes and wish's it would all end... There are times if it were not for my family I would have already ended it.....
I learned to deal with 3-4 a month but this almost everyday thing is killing me from the inside. My wife told me the other day that I am not the same person that I used to be... No shit I fell like a walking zombie with little sleep and the continuing fear of another attack. I got laid off because of this as well...... What they hell do you do to survive when it gets this bad?
I have had every damn test screen poke prod, you name it. But I am losing it and losing it fast. Depression has set and they are treating for that now as well because of the pain. I don't know where to turn!
Thanks for the vent.
Athos
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| « Last Edit: Jan 23rd, 2003, 4:25pm by athos » |
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cootie
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Re: Desperation has set in! Please Help
« Reply #1 on: Jan 19th, 2003, 4:26pm » |
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athos12.....Hi....You've made the 'rite' turn here dude...pain don't bring the best out in anyone....read up and you'll learn alot on here and maybe come up with a combo that works for you...am sure sumone will be able ta help ya here....am wishin ya good luck....Pam
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Slydog
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Re: Desperation has set in! Please Help
« Reply #2 on: Jan 19th, 2003, 4:29pm » |
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Athos Your logo to the left says it well. Connor is how you keep going. Have your wife come to this sight with you and maybe it will help her understand why you are different lately. Wishing you PF times and vent all you want if it helps. Sly
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cbolony
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Re: Desperation has set in! Please Help
« Reply #3 on: Jan 19th, 2003, 4:55pm » |
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did you every try imitrex injection they help me a lot
i have 3 to 4 cycles a year each lasting 6-8 weeks.hang
in there and yes i have kids thats what i live for
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verndy
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Re: Desperation has set in! Please Help
« Reply #4 on: Jan 19th, 2003, 5:06pm » |
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hang in there man
where do u live if its not to far you can call me if you get to down im brook i got tripl billed from msn $117 phone bill and this has been going on for over a year they owe me over 300 bucks and they keep hanging up on me when i try to get it back
this site saved my life when i was depresed good info and good people here send me a e mail any time im gitting the headachs for 5 more weeks or so so any time i could be up
im shure u know the drill the same time on the clock thing
really e mail me and if your haveing trouble we can talk
i just went throug the mnm thing thanks for your post the more people i can help maybe the more good will come my whay
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KingOfPain
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Re: Desperation has set in! Please Help
« Reply #5 on: Jan 19th, 2003, 5:28pm » |
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athos 12,
Sorry you are having such a bad time. We are here for you.
You said nothing about oxygen in your post. Do you use it? If not, you should look into getting some. My defense is imitrex, oxygen, & verapamil.
I never had any luck with prednisone, except bad side effects. Hope it works for you.
The thing that keeps me going when under attack is knowing it will not last forever. It will get better.
Good luck & I hope it gets better soon for you.
KingOfPain.
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cathy
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Re: Desperation has set in! Please Help
« Reply #6 on: Jan 19th, 2003, 5:32pm » |
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Athos...sorry you're feeling so bad...just to let you know im sending you pain free vibes and prayers ....
Cathy
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The mad viking
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Re: Desperation has set in! Please Help
« Reply #7 on: Jan 19th, 2003, 5:42pm » |
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I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway
Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily
This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway
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Mark C
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Re: Desperation has set in! Please Help
« Reply #8 on: Jan 19th, 2003, 6:08pm » |
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Sorry you are getting hammered....hang on brother.
The triptans are the nectar of the Gods for me, the first thing that ever had a positive effect. The steroids have worked well for me in the beginning but after tapering off the attacks have returned. Imitrex injection is my choice of abortive. I wish I had a magic bullit but finding the magic potions to ease our pain is elusive at best. I will attach a favorite link, I hope it helps.
PFDAN's,
Mark
http://www.clusterheadaches.org/medications.htm
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athos
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Re: Desperation has set in! Please Help
« Reply #9 on: Jan 19th, 2003, 11:58pm » |
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Thanks for all of the support!!!!!!!
I have tried immitrex, I stopped breathing with it. I rather like breathing I was so busy trying to breath I am not sure if it help the headache or not.
I have been on:
Verapamil
Ergostat
Cafrogot
Midrin
O2 - makes me feel better but the pain is still there.
Mega doeses of Nuerontin
That is all that I can think of I am sure there were more.
Currently
Topamax 125 ml 2x day
prednisone only for 4 days now.... just makes me cranky and not sleep well.
and lorazpram for depression which is working great when I don't have a headache.
You know I wish Doc's could make up their minds.
I went to the Mayo Clinic's Headache treatment center in Arizona and saw one of the best headache doc'c their is. He told me don't let anyone tell you that these are not clusters.
My neuro here says did't you have a headache on the other side once... yes I did have a headach but not like these...... He still thinks that I have migraines.... He is still following the treatment plan from the Mayo so far, but since they have been coming on so frequently my neuro's appointment are 2 months out. I call him and he gets around to messaging me back through his receptionist 3 days later.
I am litterally going nuts.. I am losing my mind. It is a good thing that I have no small guns in the house. I beginging to think that they may have to lock me up just keep my around! That scares me. It is not depression, it is fear of the pain, and I know that you guys know what I am talking about. This has been going on for 4-5 days a week for the past month, I don't know how much more I can take.
Athos
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Charlie
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Re: Desperation has set in! Please Help
« Reply #10 on: Jan 20th, 2003, 1:49am » |
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Sorry this thing has decided to make your life miserable. Everyone here knows more about drugs. All I took was Inderal and for me it was very helpful. Here is a technique that I used with great success:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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rick
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Re: Desperation has set in! Please Help
« Reply #11 on: Jan 20th, 2003, 3:04am » |
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Athos,
Sorry to hear about this my friend. I know it may sound radical on the surface, but have you given the mushroom therapy any consideration? It has worked wonders for a number of us here who had also seen failure in attempting numerous treatment options. I have to confess, I was highly skeptical of the treatment myself until I sat down and seriously took the time to read about it. Please ask any questions you might have if you are interested, and here is a link that might help:
http://www.geocities.com/ClusterBusters2002/
Good luck-R
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Linda_Howell
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Re: Desperation has set in! Please Help
« Reply #12 on: Jan 20th, 2003, 3:05am » |
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I realize you posted this in desperatrion but I just wanted to say that Charlies method will NOT work
in desperation.
so if you want to talk.........calm and serene
try his method in off times. That is : when you're not getting hit. I have. And I'm chronic. It works to some degree. I have yet to have it work at a kip 10.
But it does work. Linda
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rick
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Re: Desperation has set in! Please Help
« Reply #13 on: Jan 20th, 2003, 3:34am » |
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I most definitely agree with Linda on that point. For me, this technique is pretty difficult to attempt out in public, but I have had partial if not full relief while doing this exercise at home alone. I once fell asleep in the middle of an attack sitting straight up on my couch with this treatment. Woke up and the attack was over ;D.
-R
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| « Last Edit: Jan 20th, 2003, 3:34am by rick » |
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brain_cramps
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Re: Desperation has set in! Please Help
« Reply #14 on: Jan 20th, 2003, 9:00am » |
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on Jan 19th, 2003, 11:58pm, athos12 wrote:I have tried immitrex, I stopped breathing with it.
...
I have been on:
Verapamil
Ergostat
Cafrogot
Midrin
O2 - makes me feel better but the pain is still there.
Mega doeses of Nuerontin
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I hope you weren't taking cafergot (or ergostat) at the same time as imitrex! (might explain the breathing problem.
<<<
Ergotamine based migraine treatments such as DHE 45 injections, Cafergot, Ergostat, Migranal nasal spray, or Sansert, should not be used within 24 hours of using Imitrex.
>>>
http://www.accessmednet.com/prescription-drug-information/imitrex-side-e ffects.html
I was warned about that years ago when first received Imitrex.
Grant
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JDH
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Re: Desperation has set in! Please Help
« Reply #15 on: Jan 20th, 2003, 11:30am » |
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athos,
Hoping you find relief soon. You came to the right place to do some venting. Read all you can on this website and try to find a Dr that knows something about CH's. The right treatments can make a big difference.
pfdan's to you brother.
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Brassbear
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Re: Desperation has set in! Please Help
« Reply #16 on: Jan 20th, 2003, 11:35am » |
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athos,
Sorry you're in pain bro. Hope this cycle is brief.
About the neuro, I will give you the same advice a doctor game me on that one: Go sit in his office and refuse to leave until he does something for you or gives you what you want.
Hope you get some PFDANs soon bro.
Michael
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ComputerGeek
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Re: Desperation has set in! Please Help
« Reply #17 on: Jan 20th, 2003, 4:27pm » |
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Hi Athos,
When I am in peek cycle I get 4 to 6 CHs daily and that can go on for weeks at a time. I have tried a lot of the durgs you have but there are only two that have let me lead a semi-normal life: Imitrex injection to abort headaches and Sansert to prevent them. It takes about 5 days on Sansert before the CH's subside. Since you can't take imitrex have you tried Sansert? Keep trying different drugs until you find one that works for you. I use to take Elavil which you did not mention. It is another possibility. Kids are a great reality check and anchor and I am thankful for mine.
Pat
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2late
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Re: Desperation has set in! Please Help
« Reply #18 on: Jan 20th, 2003, 4:49pm » |
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sorry to hear yer goin' thru this bro' have you tried lithium mixed with verap? some around here swear by it, also depakote seemed to help me awhile back, personally with 02 i need 15lpm for at least 10 mins. to kill it. good luck & hang in! .........2late
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brain_cramps
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Re: Desperation has set in! Please Help
« Reply #19 on: Jan 20th, 2003, 6:39pm » |
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on Jan 20th, 2003, 4:27pm, ComputerGeek wrote:| there are only two that have let me lead a semi-normal life: Imitrex injection to abort headaches and Sansert to prevent them. |
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ComputerGeek:
See the quote in my post above.
Also, it has been posted a few times recently that Sansert has been discontinued by Novartis.
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| « Last Edit: Jan 20th, 2003, 6:45pm by brain_cramps » |
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athos
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Re: Desperation has set in! Please Help
« Reply #20 on: Jan 21st, 2003, 12:37am » |
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You guys are great the past two days have been okay today is starting again. Not bad right only about a 4 right now so still functioning normally.
I don't think that I was on a preventative at the time that I took the imatrix, becasue then they were just eposodic 3 times a year maybe if that.
I wish I could get some doc's to agree. The ones at the Mayo seemed to bee the ones that had all the right answers to me. and the one that I am seeing now gives me short quick answers and I am in and out in fifteen min. the doc's at the the Mayo clinic took 4.5 hours with me and the clinic staff there treated me with soooooo much respect and kindness I could not believe it.
I hate going the the ER. ER Doc's just think that I am some sort of junkie or something. My family doc is cool, he is a friend as well, he comes to dinner, we play golf etc...
Maybe the circulatory thing maywork.. My circulation has been horrible lately my hands and feet have been freezing all the time, it could'nt hurt. I will try it tonight before itt gets tooo bad.
I saw a great political cartoon. Obsese guy smokes in pocket.... with a doc. the doc is saying ... You won't quit smoking, you won't exercise, you won't diet, you won't stop drinking. There is magic no pill that can save your life......................... For less than $1000 a bottle.
Thanks again for the support youguys are great!!!!!!!
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athos
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Re: Desperation has set in! Please Help
« Reply #21 on: Jan 21st, 2003, 2:06am » |
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Rick,
I will have to ask my Doc friend about the mushroom and have him read the information on that site.. The neuro won't be open minded enough but my family doc just might. My neighbor is also works for a pharacuitcal comapany and was a pharmcucitical doc of sorts himself once. I trust his opinion as well.
If it could keep these away for 6 months at a time Hell I will try it.!!!! right now I can't keep them away for 2 days!
Athos
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athos
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Re: Desperation has set in! Please Help
« Reply #22 on: Jan 21st, 2003, 12:37pm » |
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Has anyone found a doc that said to try mushrooms?... BTW will they show up on a drug screen?
---Athos
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catlind
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Re: Desperation has set in! Please Help
« Reply #23 on: Jan 21st, 2003, 12:57pm » |
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Athos,
I don't know that any doctor would OUTRIGHT suggest an illegal substance. Although when I told my Dr of the success of psylocibin (sp) she said "well when the legal meds don't work....."
So not really saying to do it, but not telling me not to either.
That's probably as close as you'll get.
Cat
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MadMan
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Re: Desperation has set in! Please Help
« Reply #24 on: Jan 21st, 2003, 12:59pm » |
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Athos, I'm 42 & cronic now for 2 years. Don't laugh at this, but have you tried over the counter decongestants? I'm using generic sudafed on top of my topomax as needed. It seems to work most of the time.
Also, I find walking (pacing) helps me. Or sitting with my head between my legs & then sitting up quickly (repeat over & over)
After lurking around this site for over a year I have finally decided to join. What I have noticed however, is that what works for one person may not work for the next. Keep plugging away till you find what works for you. But keep plugging away.
We are with you. For we are you.
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