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Title: New and Frustrated Post by PsychoticDreamer on Jan 14th, 2008, 2:04am Hello, I have just been introduced to a place that is Hell. It all started as what I thought would be a common migraine on June 22, 2007. As it continued, my medications no longer worked and, in fact, caused things to become worse. I started feeling this burning pain behind my left eye that radiated across the front lobe to my temples. Light began to dance and tunnel vision was a common occurrence. As my family doctor saw me, and prescribed something for the pain, he confirmed that I was healthy. The ER doped me up and made me sleepy, although I could still feel the pain. The CAT scans and the MRIs came back normal, the MRI showing some chronic inflammation over my left eye, but no tumors, no shouts of alarm. Finally, after 30 days of suffering, 30 days of missed work, I got to see my neurologist. After taking a look, he diagnosed me with CH and sent me off with a prescription for Imitrex nasal spray. It did not work. In the proceeding months, my mood waxed from hopeful optimism, to severe depression. The drugs cycled every month to something new to help prevent. Yet nothing aborted. I take Floricet at onset to help purge the edge, but even then I often end up curled someplace crying my eyes out in the agony. No one seems to understand. I work for a bank at a call center as customer service. The small remission I had lasted for 4 days before the headaches returned. I struggled and scraped through blood pressure meds, anti-seizure meds, and now an antidepressant. Though nothing helps, at least the Elavil is keeping me from downing the contents of my growing pharmacy to just fall asleep and never wake up. The hardest part is the isolation. We moved right before these began and I had no opportunity to make any new friends. My husband is working like a fiend to keep us afloat and I have almost maxed out a line of credit to pay the increasing medical bills. Yet, what hope is there? My neurologist on my last visit has passed the puck. He is sending me down to Philadelphia to see some people in a headache clinic. Nothing has worked and I feel like he is giving up on me. If I can stump the specialist, then what hope is really left? The only one whom really seems to understand is my GP. My bi-monthly visits to him are more of a psychological sit down than any thing else. It is his hope that makes me hope that something will eventually result. I have only been living with these.. or existing.. for 8 months now and it is by sheer will that I still cling to my sanity, though some days are better than others. No one at work understands. My explanation to my insurance for some sort of disability has them in disbelief. There are days that I pray for cancer. That God put a tumor in my head so that there will be something physical to fight. This silent vigal is never ending and harder than anything I could ever have imagined. May God continue to give me strength and may He bless all of you in yours. |
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Title: Re: New and Frustrated Post by artonio7 on Jan 14th, 2008, 5:01am Dear PsychoticDreamer, I am so very heartbroken that you are going through this. I know exactly the type of frustration that you are feeling as well as the sort of pain you are having. Hang in there... you have come to a good place and this family will try to help you as much as possible from our shared experience as sufferers and suoprters. We are not medical professionals but for the most part, when it comes to CH we are expert patients, many here have had to deal with this condition for more than 15 years. We share what we know and give each other support. Some people on this site are here for the sole purpose of supporting. As difficult as it may be to read when you are in such a state of pain and depression... please read the resources to be found by clicking on the links to the left of this page. DO NOT HESITATE asking questions. I am not a professional but I have found that Oxygen therapy has helped me substantially in aborting cluster headaches... you may want to ask your doctor for a prescription of 100% medical grade o2 administered at 15 liters per minute with a non-re-breather mask. Can you describe the type of pain you are having and how long each attack lasts? Others will come along soon to introduce themselves and to lend their support and wisdom. Keep your chin up and know that I will be praying for you. with warm regards, Tony |
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Title: Re: New and Frustrated Post by PsychoticDreamer on Jan 14th, 2008, 8:32am on 01/14/08 at 05:01:32, artonio7 wrote:
The pain will depend. I have a suspicion that I am still occasionally getting my normal migraines that will then trigger a CH. It will start with vision alterations and a bit of overall pain in the front of my head. After about a half hour, it will begin to pierce behind my left eye. Very rarely does it turn into a throbbing pain. When they are bad I get a burning sensation. As though someone doused my brain with gasoline and lit a match. My husband jokes that my eye looks like it is trying to pop out and I get a horrible nasal plug. (By the By.. I take Oil of Oregano for that. I have noticed if you can discharge some of the sinus pressure, the intensity of the CH decreases) I had discussed O2 therapy in passing, but I am young (only 23) and my doctors are nervous to put me on too much and experiment a lot. I had to fight for some of these medications and I am running into the fact that my husband and I want to have children in a few years. That means I'll be pushed off of my medications. My current Neurologist seems to be more focused on the preventative than the actual pain nullifier. It is difficult to get things done where I am at as far as specialists go and most people look at me as though I am making things up. The hardest part is my ability to concentrate. I cannot drive and often run into problems where reading or even watching a movie will trigger them. I went from a very trigger happy environment at work to near isolation at home. Things are not as painful, but I get multiple CH a day. On average 4-5. Though even when the pain goes down I still feel a pressure and very very drained. |
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Title: Re: New and Frustrated Post by imfareware on Jan 14th, 2008, 9:38am Hello and welcome. I share your pain with you. I've been having these headaches since 1986, some bouts are a little better than others, then some are worse. See your doctor about O2, thats really the only help there is. I've been prescribed everything, and nothing worked, just a pack of ice on the head with some isolation until they subside. Take care and post often! |
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Title: Re: New and Frustrated Post by maryo on Jan 14th, 2008, 6:27pm One of the worst things about cluster headaches is feeling out of step with the world around us. No one understands (except the folks on this website). The average person cannot. It is not classified as a disease. But I tell my friends it is a disease because they try to equate my experience to their headaches and that can hit me wrong and get me more pissed off and frustrated than I already am. I have trouble with hopelessness as well. Somewhere on this website or OUCH is a form you can have on you for ER visits so you don't get treated appropriately. Much info on both websites, lots to take in. Hopefully you'll find some things that work soon. To me, the hardest part has been finding that medical person to be my partner. I don't think the MD hesitation about oxygen is founded. Bargain with them -- tell them, let's try it for two weeks and see what happens. It boggles my mind that docs prescribe strong meds but get all sweaty about oxygen!!! Keep venting here. |
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Title: Re: New and Frustrated Post by DennisM1045 on Jan 16th, 2008, 1:11pm Welcome to the family. I'm so sorry to hear how little relief you've had from your efforts. Doctors are in love with meds and are unexplainebly afriad of Oxygen >:( I'm another O2 user that has had great success. 15 minutes with my tank and I'm typically a new man. If the beast comes back I hit him again. Failing that I have my precious supply of Imitrex injections. Quote:
This isn't experimentation, its the most effective form of treatment for many of us. Please take a look at the O2 info on the OUCH-US site here: http://www.ouch-us.org/medications/oxygen/o2links.htm Print this info out and take it to your Dr. Then they won't feel so squishy about perscribing it. Quote:
This is another reason to go for O2. You can use it while pregnant and there are almost no side effects. You can't say that about any of the other drugs we need to use. Another point... you say they Dr has changed your meds once every month. Some people here have not seen results with certain medications for 6 weeks. I wonder if you were moved off something that might have been effective had you been left on it a bit longer. I wish I had more. Hang around, keep posting and we'll do all we can to help you. -Dennis- (edited because I can't type ;;D ) |
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Title: Re: New and Frustrated Post by BarbaraD on Jan 17th, 2008, 6:20am I'm with the others on the O2.... It's safe, it's relatively cheap and it usually works for most of us. BUT it has to be on HIGH flow with a NON-REBREATHER mask (important!). OTC stuff that might work (better than drugs for most of us) Red Bull energy drink, Ice, Coffee, Melatonin at night. Pain meds DO NOT work on CH and only make you dopey. Imitrex (nasal spray or injectibles) or cafergot are the aborts that seem to work for most (vaso-constrictors - work for both migraines and CH). Prevents that have worked for most are verapamil, topamax, lithium and a couple of others. Read on the medical info site on the left side of this board BEFORE you go back to the doc and print out what you need. Most of the prevents are trial and error and each of us has to FIND our magic cocktail. Sometimes this takes a while. Just know you are not ALONE - we're all in the same boat here. A lot of us suffer from both migraines and CH (I'm one and I'm a chronic CHer). There's more information on this site than anywhere else you'll find. Read Read Read.... and ask questions. We're here to help.... Hugs BD |
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