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Topic: Need Help (Read 931 times) |
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Matt
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I've started showing the same traits everyone here has and after doing some searches on the internet believe that I have CHs. I've spent so much time in the hospital in the last two weeks drugged up on morphine or whatever else they were sticking in my IV, that I lost my new job. I started in December and 2 weeks ago my CHs started and I get anywhere form 2 a day to 1 every other day. this is completely random. Anyhow, I lost my job and I don't know where to turn, my girlfriend cant work and watch the kids. I cant watch the kids becaues I might have another 12hr migrain like I did last week. Is there something I can do to get help from the government that anyone knows? I am a Marine Corps vet so luckly all my medical bills are very tiny. I realy need help. I don't have any faimly on this side of the US. they all live in NC while I live in OR. I'm sorry if I seem to babble, but I believe my CHs are related to REM sleep and I'm terrified of sleeping now. If someone knows any way to get help please let me know asap. I have another doctors apointment comming not sure when yet, however we dont have any money saved up. and the bills are adding up faster than I can panic about them. Im going to be 30 soon and in the last 2 weeks I've done more crying than I have since I was 16 and my girlfriend dumped me. So to sum this up, I was just wondering if there are any programs out there to help me get along with bills untill this is hopefully over if there is an end to it...
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Ellick
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Re: Need Help
« Reply #1 on: Feb 27th, 2005, 5:03am » |
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Hello Matt,
I am new here too but have had CH for some time. If you are currently not using Triptans then look at the post on using Kudzu or depending on your perspectives you might want to look at clusterbusters.com.
Sorry you are here. It is one of the best places that I have found. Support makes a huge difference and there is lots on here from good sound solid well researched advice, years of experience and hugs.
There is support for partners too. They have just as tough a time.
Fight it.
My best wishes to you.
Ellick
Hope you get out from under this
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Renee
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Re: Need Help
« Reply #2 on: Feb 27th, 2005, 5:07am » |
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Can you clarify for me, do your ch's last 12 hours or just migraines?
I do not know of any financial support groups but that is not to say they are not out there.
I hope things improve for you soon.
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Gator
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Re: Need Help
« Reply #3 on: Feb 27th, 2005, 5:38am » |
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I'm sorry you have a reason to be here, but this is the place to be if you have CH. CH sucks - period. If it has only been going on for two weeks, it is really still too early to know for sure what you might have. Take the cluster quiz in the links to the left. Also read all the information in the links to the left and on the OUCH website.
There are some things that can mimic the symptoms of CH. An MRI is a very good idea to rule out any organic cause for your headaches. It is rare, but there have been a very few people come here and relate the MRI actually showed a physical cause for their pain.
Get with a neurologist, one that specializes in headaches if possible, so you can get a proper diagnosis and treatment. Unfortunately, you may end up teaching whatever doc you get about CH. Print out things you read that highlight your symptoms and treatment options.
It is a good idea for you to start a headache diary. Write down the date, time, pain level on a scale of 0 - 10, duration, what you took to stop the pain, what effect that had, what activity were you doing when the pain hit, what if anything you ate just prior to the attack and the weather at the time of the attack. Seems like a lot of stuff, but there are some food items that can trigger attacks. Changes in barometric pressure have also been known to trigger attacks. A headache diary will further highlight your symptoms to your doc and give him or her better insight into what is going on with your head.
MAKE SURE YOU TALK WITH YOUR DOCTOR BEFORE TAKING ANY MEDICATION. The meds we take for CH can be dangerous to someone that does not have CH. Hell, they're dangerous to us, too for that matter.
In addition to the stuff in the links to the left, here is a link to read and print and take to your doctor. If you do have ch it may prove useful. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
Again, assuming a diagnosis of CH, here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
Basically, you are fixing to enter information overload mode. READ, READ, READ and print out what will be helpful to your doc.
I'm happy for you that you can use the VA Hospital. Every little bit helps. This is a friggin expensive disease to have as treatment is hit and miss at best. Lots of trial and error with different very expensive meds until you find a preventative that works for you. As far as assistance programs, check with your local Department of Human Services or whatever your equivelent may be. You may qualify for various assistance programs through them.
Again, I'm sorry you even think you might have this disease. If you do, you can't do any better than here for info and support. I hope things turn out okay for you and you find the help you need.
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PCMCCK
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If this is of any comfort, Matt, CH is not related to REM sleep, but often sleep, particularly naps, can trigger a CH attack upon awakening. Many CH sufferers are afraid to go to sleep-happens to me from time to time and I've had CH for 26 years. Since you are a vet, I recommend that you get in touch with the local Vet Center. They are a part of the VA and a great part of their job is to try to get financial assistance for veterans for whatever reason and the cause of your illness need not be service connected. Ask a member of the Social Work Staff at the hospital to put you in contact with the nearest Vet Center-many Vet Centers have outreach programs to VA hospitals or will send someone out to see you (I used to be a director of a Vet Center and we helped many vets in situations like yours); if you are a combat vet or served during the time of the 1st Persian Gulf War or any other recognized conflict period, even if you didn't actually participate in the fighting, you may be entitled to additional benefits. Have you been dianosed with cluster headaches? If not, ask to see a neurologist and even if you have been, ask to see a neurologist and ask him/her to explain what the disease is and what can be done to help. I won't go into recommending medications or other treatmetns, but just be aware that there is no one (or two) treatment that works for everyone-each person's case is really individual and you may find yourself trying all sorts of medications that don't work before you and your doctor find one (or more) that help. It can be very frustrating, but hang in. You are not crazy, though you may feel at times that you are and you will not always be in such severe pain as remissions of varying lengths of time are common. It is not unusual for CH people to get depressed and even suicidal-if that happens, tell your doctor, please! While CH is a terrible illness, it is not worth taking one's life over. I've found it helpful to have a doctor explain the illness, with the sufferer present, to the sufferer's spouse/partner so that he/she will know what you are going through and why you may act certain ways at times that are not like your "normal' self. One last thing: CH is a real illness, it is not psychosomatic, not a sign of any sort of emotional or any other type of weakness and anyone who tells you to "snap out of it" or "act like a man and deal with it" is ignorant. Semper fi!
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Mach
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Re: Need Help
« Reply #5 on: Feb 27th, 2005, 7:46am » |
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I just joined this group yesterday and I notice tons of support and information to people like Matt.
Matt -hopefully you will find relief from both the headaches and your financial pressures.
And to those who suffer from CH and come on here and offer support to people like Matt in their time of need , you're the best
Sometimes the emotional pain from CH can be greater than the root cause
Hang in there Matt, we're hoping the best for ya
Mach
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Jeepgun
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Re: Need Help
« Reply #6 on: Feb 27th, 2005, 10:20am » |
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on Feb 27th, 2005, 7:46am, Mach wrote:I just joined this group yesterday and I notice tons of support and information to people like Matt.
Matt -hopefully you will find relief from both the headaches and your financial pressures.
And to those who suffer from CH and come on here and offer support to people like Matt in their time of need , you're the best
Sometimes the emotional pain from CH can be greater than the root cause
Hang in there Matt, we're hoping the best for ya
Mach |
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Ditto. Thank you for your service to our nation, as well.
My best to you, Matt.
-Frank
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forgetfulnot
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You might qualify for SSA Disability. It is a long process but being a Vet maybe that would speed yours along. Mine took 4 years to get a judgement and they have owed me over $50,000.00 for 120 days.
Good luck
Lee
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rcw134
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Re: Need Help
« Reply #8 on: Feb 28th, 2005, 2:14am » |
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Hi Matt,
I understand the position you're in. My prayers go out to you and all that have these bastard headaches, be it cluster or migraine.
Check your state's web site (OR.com) and see if there are any services available to you. You might qualify for state aid - also the military should be doing more for you. Use the internet and start looking up sites dealing with the military and programs offered. If I come across one I'll send the info to you. Try the red cross and their programs, food pantrys - other aid.
Hang in there - the people on this site that are serious and have CH or midgraines offer a world of healing just in their postings and e-mails. I'm new to this site and am very grateful for the frank and knowing communication - we're all in the same boat in one way or another.
Good Luck to you and your family
Ray
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TonyG1
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on Feb 27th, 2005, 4:18am, Matt wrote:Is there something I can do to get help from the government that anyone knows? I am a Marine Corps vet so luckly all my medical bills are very tiny. I realy need help. I don't have any faimly on this side of the US. they all live in NC while I live in OR. I'm sorry if I seem to babble, but I believe my CHs are related to REM sleep and I'm terrified of sleeping now. If someone knows any way to get help please let me know asap. I have another doctors apointment comming not sure when yet, however we dont have any money saved up. and the bills are adding up faster than I can panic about them. Im going to be 30 soon and in the last 2 weeks I've done more crying than I have since I was 16 and my girlfriend dumped me. So to sum this up, I was just wondering if there are any programs out there to help me get along with bills untill this is hopefully over if there is an end to it...
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Hey Matt - Sorry to hear you're in pain !!  You indicated you're a veteran (me too) -- check out the following link:
http://www.myhealth.va.gov/MHV.portal?JSESSIONID=Cj5Hhhhtz4lVCyNCxyWtqmZ KSCQy60TPm8btM3fWtz2PpDp5ZYGZ!-1755432109!-676166813&_nfpb=true&_pageLabel=myHealtheVet
Go to the Benefits and service tab and when you get to the next page, check out the health benefits portion. There is A LOT of useful info there for veterans.
Hope you find some useful info and some relief from the pain. I've had CHs for about 18 years and know that fear of going to sleep.... you can't let it rule your life. Go to sleep, the headache will come or it won't ...
Good luck to you and many wishes for PFDANs!!
Tony
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sandie99
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Re: Need Help
« Reply #10 on: Mar 2nd, 2005, 2:01am » |
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I am so sorry you're in pain... I hope that you'll get to meet a neuro soon and get your diagnosis confirmed & some meds. I wish you the best.
Best wishes,
Sandie
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Margi
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Re: Need Help
« Reply #11 on: Mar 2nd, 2005, 10:12am » |
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on Feb 27th, 2005, 7:34am, PCMCCK wrote:| If this is of any comfort, Matt, CH is not related to REM sleep, |
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sorry, but that's incorrect. CH is related to REM. Seratonin levels drop during REM sleep, which often triggers middle of the night attacks. In order to avoid those attacks, many sufferers take Melatonin. You can also use Benadryl or Dramamine. Both of these over the counter meds prevent REM sleep.
Matt, try one of those suggestions and also, get a doctor to prescribe oxygen to you. Delivery method is crucial for success, must be through a non-rebreather mask and at a flow rate higher than 8 litres per minute.
You may also want to read up on the Kudzu root treatment that is going on - it's having an amazingly high success rate amongst cluster sufferers.
Do take the quiz on the left - a 12 hour attack is most probably not cluster but more indicative of migraine. Some people have both maladies though, so best to get a good diagnosis.
p.s. to Mach: can't find your original post but wanted to tell you that we also have a Canadian website with a message board like this one. Please check us out: http://www.clusterheadaches.ca We have quite a few sufferers in your area who can probably help you in your battle!
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| « Last Edit: Mar 2nd, 2005, 10:19am by Margi » |
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Lili
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Re: Need Help
« Reply #12 on: Mar 6th, 2005, 4:21am » |
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Hi Matt
Best of luck to you, Bud! My thoughts are with you and specially with your girl friend, please let her also get onto this site there's a space for people supporting people with ch, and it often helps others understand and better cope. I know it did for my boyfriend. You must remember she's probably experiencing what you are and may be confused and also battling to cope.
Want to mention nightmares & REM. As soon as I got past the nightmare stage, ch would strike, but most nights I never reached REM but went from dosing off, nightmare, startled awake, dosing off pattern and ended up exhausted!
Thinking of you.
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Jonny
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Re: Need Help
« Reply #13 on: Mar 6th, 2005, 4:36am » |
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on Mar 2nd, 2005, 10:12am, Margi wrote:| sorry, but that's incorrect. CH is related to REM. |
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Margi's right....otherwise I wouldnt be up right now 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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