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My name is Diane, I am 40 yrs old and have suffered from chronic cluster headaches for the last 9 years. I lost my job as a Marketing Director for Dell Computer, I lost my husband as he decided it was too difficult for him to live with someone in chronic pain - wish I could have traded him. Anyway I am now raising my 2 teenage boys on my own and am on SSDI, but it is so tough. My headaches/neck pain is 24/7 and ranges from a 3 (which is a great day for me) and a 10 (which might mean an ER visit). I have tried everything from heavy duty medication (oxycontin - which I won't take again, too strong) to surgeries where they burned the nerves in my neck - unfortuately nothing has work yet and in fact the surgeries made it worse.
Now I am on medications for depression, anxiety and the pain - but all I am doing is making it from one day to the next...it's not much of a life and it's so hard on my kids.
One of my huge frustrations is that I keep coming across Dr's who tell me "It's all in my head, and I'm faking it". It's so frustrating to have a Dr. say "You maybe had headaches some time ago, but now you must have a mental problem and you are creating your own headaches, go see a therapist." I'm already seeing someone to help me with cognitive pain mgmt.
I am beginning to lose hope that I am ever going to find a cure, or even something that would truely help me function at a higher level in life? I have very sad and some suicidal thoughts, but am thankful for my kids because they are the reason I get up everyday.
If anyone has advice on pain mgmt, support systems, or other alternatives to just pain medications then I would love to hear from you.
My apologies for it taking me a few days to reply. I actually thought I had added my reply the other day, but It must not of made it through?? So anyway
Welcome to the Chronic Pain Connection!! I'm really glad you found us and I hope somehow or some way we can assist or support you as you continue to live a life in pain.
I am really sorry that you've been abused as you have from so many of our medical providers, whom a person would think that missed the part of having compassion and understanding for their sick & in pain patients. Your not the first to have horror stories to tell and I'm positive you'll not be the last. As unfortunate as it is and how badly it can damage us, I'm hoping that through further advocacy on the part of all us who live in daily pain, that maybe someday?? We will no longer have to tolerate the abusive treatment of those that you've explained in your own situation. Including our family & spouses.
I don't recall you having any spacific question for me to try to help you with. But if your interested? We do have a support Group on going discussion, down in the OFF TOPIC area of this forum. It's called "The Daily Grind" it's just a small group of us and we post our feelings and what ever we are doing in life, then others pop by and give support, with very loving and understanding advice & replies.
I've been very blessed to of made some very dear friends in the forum and we would all love it and Welcome you with open arms, If you'd like to join us. It's a no pressure sort of deal. You can post as much or as little as you'd like, as often as you'd like and your participation is completely up to you, your abilities and your own schedule. It's a very layed back group and I personally don't know what I would do without the DG gang. So if you'd like, stop in and say hello. Take a look through the older posts & months to get an idea of what we do and or what it's like. If you think it would be a helpful option for you, then jump right in. If not, don't worry, your welcome to post your questions and such under the topics already provided and I'm sure you'll get some help.
If I can be of any help with navigation or finding some info your interested in. Please don't be shy and just leave a message here or you can send me a private message by clicking on my picture. Hope to see you around and we are all very happy that you've joined us and really would like to help you & support you in any way we can.
Gentle Hugs Take Care of yourself Betty
Posts: 1199 | Location: Home in Washington State | Registered: 11-07-2007
Dear Diane, It sounds like we have alot in common.I suffer also with cluster haedaches due to a neck injury 5 years ago. This is my first communication on a forum,came here looking for support and you were the firet post. Have you ever been given toradol? This is the only thing that helps my headaches. And also icepacks, I have 4 in the frezer.The doctors that are telling you its all in your head should be in another profession. They are uncaring idots, that are only in it for the money.I have seen doctors like this, and it can really hurt being told these things. I also suffer from depression,and cannot work.This takes away you self-worth, and like you I am only alive today due to my 3 sons(19,18 and 10).Looking forward to hearing from you. It will get better, so hang in there..Sharon
Posts: 6 | Location: Panama City Beach | Registered: 06-14-2009
Hi Diane, I, too, am sorry to hear how much pain you're suffering with. Although I'm very happy to have you join us here at ChronicPainConnection, I'd also like to make sure you know about our sister site, MyMigraineConnection That site deals with all kinds of headaches, including chronic cluster headaches. They have some of the best information you'll find and also have a very active and caring forum. I hope you'll check them out.
And, of course, if there's anything we can do for you here, please let us know.
There are MANY alternatives to pain medications. There are over 100 medications that can be tried for prevention. The same medications that are used to stop Migraine attacks can work on clusters for some people, especially Imitrex/sumatriptan injections. Inhaled oxygen stops cluster headaches for many cluster sufferers.
As Karen said, come on over to MyMigraineConnection. It's not just for Migraines, and we have a discussion forum there too.
Thx all for your kind words, it helps to know that I am not alone and that I am not 'crazy'. I'll hit the migraine connection website too and see what I can find there.
Hi Sharon, like you I live with ice packs on my neck to try and keep the pain level down by numbing the muscles and slowing down the blood flow. It's just one of the pain mgmt things, as you well know.
I have not tried Toradol, my Doc has me on Lortab and some other preventatives for headaches, but I think the Lortab is short term help but might be causing rebound headaches? Have you had any experience with that?
My Doc also wants to try Neurontin? Any ideas on that one? Thx much!
Diane, I was taking neurotin for 2 years and it did help me.I cannot take it now due to some of the other meds. I am on.Lortabs can cause rebound headaches, what do you do? I am very lucky to have a wonderful nuroroligest(one of the best in the country). But before I found him I almost took my own life.Thank God I relized this and checked myself into a mental hospital. It turned out that although I was taking pain medications, my depression was so bad they were not helping. Once I started on a good anti depressant things got better. Toradol is a very strong anti immflamatory. I have been going to my doctor for 4 years now to get the injections, and in 10min. my headache is gone! This last for a day to 2 weeks, but on average 1 week. Maybe we can help each other. I am also getting a divorce, and very happy about it.Take care of yourself. Sharon
Diane, I have taken Neurotin, and it just may help.It is for nerve pain.Toradol is something you should talk to your doctor about. I give myself injections, and the haedache is gone within 10 minutes!It is a very strong anti-imflamtory medication, that works by reduction of the blood vesals. Do you have something wrong with your neck? I was injured 5 years ago, and what started out to be a soft tissue injury has now turned into degenterant dics. SO anyway, I am also getting a divorce-he was removed from the home almost 2 years ago because of domestic violace, I am so happy that I am not living like that now! Whan I moved to PCB FL. I could not find a doctor that would help me (workmans comp. long story). After 4 months of very terrible pain, I was at the end and really wanted just to die! I checked myself into a mental hosptal, and it was a good choice.I was there for a week, and they got me on the medications I needed and referred me to a great doctor. I hopr you get the help you need to live a better life. Never give up!!!!!!!!!!!! Sharon
Posts: 6 | Location: Panama City Beach | Registered: 06-14-2009
Anyway I am now raising my 2 teenage boys on my own and am on SSDI, but it is so tough. My headaches/neck pain is 24/7 and ranges from a 3 (which is a great day for me) and a 10 (which might mean an ER visit). I have tried everything from heavy duty medication (oxycontin - which I won't take again, too strong) to surgeries where they burned the nerves in my neck - unfortuately nothing has work yet and in fact the surgeries made it worse. 
