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Topic: What say you? (Read 482 times) |
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thomas
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What say you?
« on: Jan 24th, 2006, 9:07am » |
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Quote:I can't even tell you how much pain I am in, but I think you already know.
I am 33 years old, a woman, pregnant, and suffering. My headaches started full force about 3 years ago and have never really ceased for more than 3 weeks at a time. I am barely able to work (am not working right now) and have lost all of my friends because I am just no fun anymore. My husband somehow is hanging in there with me, but pain makes me down right mean sometimes and very emotional, he is a saint. I have 3 kids now and am due in a month or so with our 4th. I wish I could do more than sit on the side lines and watch my kids grow up.
My whole right side hurts. It hurts like hell. My neck, my shoulder, sometimes my back and always my jaw temple and eye. My hair even hurts. I can't wear anything in my hair because it will start a headache. Some days I swear I'm gonna shave it off. When I am in pain I can't stand even the weight of my clothes as my skin hurts, not to mention trying to wear a bra. When I begin to get a headache I notice that I begin to sweat and get short of breath. My heart will palpitate and then the pain starts. It seems to last all day sometimes. The pain is enough to make you wonder if life is even worth living anymore. I am sure if I didn't have kids I wouldn't still be around. The pain makes me so emotionally crazed that sometimes I think I am losing my mind.
I have been suffering for 3 years and no one has been able to diagnose me (with anything accurate) until just a few days ago. Apparently there is a lot of treatments, but being pregnant they can't treat me with anything more than imetrex and tylenol. They gave me 18 tabs of imetrex to last a month, that is all the insurance will cover. I have already taken 10 in 3 days so what I will do after that is beyond me. I was never offered oxygen,although I was told it works, he told me I would have to find it on my own. Seems odd that they are putting an HMO's budget over my life, as it is being completely ruined, and the over the health of my baby, since oxygen is completely harmless to fetus where as Imetrex has risks.
I feel completely let down by the medical profession. For the first year I was told that I was only depressed. After that they checked for a lot of things and I was diagnosed with arthritis, thoracic outlet syndrome, fibromyalgia, myofacial pain syndrome, etc. I have been sent to physical therapy, tried heat and cold, tried countless antidepressants, even bought a hot tub. I eat tylenol like candy. I don't sleep unless I am drugged thoroughly. I am depressed because this sucks. I am afraid to move for fear of upsetting "it". I am afraid to give birth because I am afraid that the strain and stress will cause the headaches, yet if I don't give birth here pretty darn soon I will go mad. You would think under the circumstances they could just take it out a few weeks early. They wouldn't let a dog suffer like this. |
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| « Last Edit: Jan 24th, 2006, 9:11am by thomas » |
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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vig
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Re: What say you?
« Reply #1 on: Jan 24th, 2006, 9:37am » |
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well, that's sad, but why is she having another child?
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aprilbee
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Re: What say you?
« Reply #2 on: Jan 24th, 2006, 9:42am » |
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Her skin hurts??? Wearing a bra hurts??? It sounds aweful...maybe CH, maybe something more serious???
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thomas
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Re: What say you?
« Reply #3 on: Jan 24th, 2006, 9:52am » |
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on Jan 24th, 2006, 9:37am, vig wrote:well, that's sad, but why is she having another child?
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Maybe because she's pregnant.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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thomas
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Re: What say you?
« Reply #4 on: Jan 24th, 2006, 9:53am » |
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on Jan 24th, 2006, 9:42am, aprilbee wrote:| Her skin hurts??? Wearing a bra hurts??? It sounds aweful...maybe CH, maybe something more serious??? |
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I think CH. Possibly something else as well, but I'm pretty sure CH.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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chewy
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Quote:well, that's sad, but why is she having another child?
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I dont think that is any of our business.
She needs to appeal the 02 decision.
Her symptoms sound a lot like Thorasic Outlet Syndrome. My ex suffers from that condition and she described my ex(s) symptoms to a T.
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| « Last Edit: Jan 24th, 2006, 9:58am by chewy » |
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Kevin_M
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Re: What say you?
« Reply #6 on: Jan 24th, 2006, 10:04am » |
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Quote:| My whole right side hurts. It hurts like hell. My neck, my shoulder, sometimes my back and always my jaw temple and eye. My hair even hurts. I can't wear anything in my hair because it will start a headache. Some days I swear I'm gonna shave it off. When I am in pain I can't stand even the weight of my clothes as my skin hurts, not to mention trying to wear a bra. When I begin to get a headache I notice that I begin to sweat and get short of breath. My heart will palpitate and then the pain starts. It seems to last all day sometimes |
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Undoctorly speaking, there are some similarities with fibromyalgia.
Fibromyalgia can cause pain and stiffness in the muscles and joints almost anywhere in the body, including the trunk, neck, shoulders, back and hips. Pain often occurs between the shoulder blades and at the bottom of the neck. Pain may be either a general soreness or a gnawing ache, and stiffness is often worst in the morning. Typically, patients also complain of feeling abnormally tired, especially of waking up tired, although they may not recall having trouble sleeping. People with fibromyalgia also have tender points, which are specific spots on the body that are painful to touch. Some patients also report symptoms of irritable bowel syndrome, depression, anxiety and headache. The American College of Rheumatology lists 18 typical tender points in its list of criteria for diagnosing fibromyalgia.
It seems that those people with fibromyalgia actually have a much lower threshold for pain than those who don’t have the syndrome. This means that even a gentle touch could cause excruciating pain in someone with fibromyalgia. Recent studies show that it only takes half of the stimulus normally necessary to produce pain signals in the brains of fibromyalgia sufferers
Tender skin (allodynia) may be a direct result of a dysfunction in the brain’s central nervous system. Fibromyalgia prevents the brain from reading pain signals correctly, and this may cause the skin to feel sore or tender to the touch.
People with fibromyalgia tend to suffer from three different types of headaches: muscle tension headaches, migraines and combination headaches.
and about 5% of women and 0.5% of men in the United States will be affected. The majority will be between 30 to 50 years of age
(with a lowered threshold of pain, a migraine could feel very intense, all day.)
*just selected info from various sites about fibromyalgia
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| « Last Edit: Jan 24th, 2006, 10:44am by Kevin_M » |
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pattik
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Re: What say you?
« Reply #7 on: Jan 24th, 2006, 10:21am » |
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I feel very badly for her. And I think this illustrates the sorry state our healthcare/insurance system is in. We need universal health care in this country. 
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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thomas
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Re: What say you?
« Reply #8 on: Jan 24th, 2006, 10:27am » |
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on Jan 24th, 2006, 10:21am, pattik wrote:| I feel very badly for her. And I think this illustrates the sorry state our healthcare/insurance system is in. We need universal health care in this country. |
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Ummmmm no we most definately do not! I was in the military long enough to ejoy the benefits of government health care. It is atrocious. We need to educate doctors. And, loby for more O2 prescriptions. I have directed her to this site and the OUCH site.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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Charlie
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Re: What say you?
« Reply #9 on: Jan 24th, 2006, 11:35am » |
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Sorry for her. Hard to judge this and it sounds like this thing has led to a point where more than medical attention is needed.
Universal care is better than none which is what tens of millions have. When it comes, and it will, you'll be able to add to it. That's the way this place works.
Charlie
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| « Last Edit: Jan 24th, 2006, 11:36am by Charlie » |
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Linda_Howell
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Re: What say you?
« Reply #10 on: Jan 24th, 2006, 12:46pm » |
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My unprofessional opinion of what she may or may not have isn't important, but I can tell you she should NOT be using Imitrex if she's pregnant.
What a rotten shame this Dr. of hers, see's fit to give her that instead of 02...
Linda
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E-Double
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Re: What say you?
« Reply #11 on: Jan 24th, 2006, 1:09pm » |
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on Jan 24th, 2006, 12:46pm, Linda_Howell wrote:
My unprofessional opinion of what she may or may not have isn't important, but I can tell you she should NOT be using Imitrex if she's pregnant.
What a rotten shame this Dr. of hers, see's fit to give her that instead of 02...
Linda |
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That is exactly what caught my eye!!!!!
Could kill the fetus.
Idiot doctors
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Kevin_M
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Re: What say you?
« Reply #12 on: Jan 24th, 2006, 1:14pm » |
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Reading my n/s trex precautions about pregnancies:
This medication should be taken only when clearly needed during pregnancy. Discuss the risks and benefits with your doctor. This drug passes into breast milk and may have undesirable effects on nursing infant. Consult your doctor before breast-feeding.
Things could go different too I'd assume though.
But I've also noticed GSK advises not to use Imitrex while pregnant without discussing with your doctor.
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| « Last Edit: Jan 24th, 2006, 1:22pm by Kevin_M » |
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BarbaraD
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Re: What say you?
« Reply #13 on: Jan 24th, 2006, 2:10pm » |
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This is an example of what's wrong with the medical care in this country. We don't have socialized medicine -- we have INSURANCE medicine. The damn insurance companies are TELLING docs how to practice medicine and they don't have a say in the matter -- never mind that they're the ones who go to school to LEARN what patients NEED - they have to abide by what the insurance company tells them is ACCEPTABLE according to the insurance company.
Maybe instead of trying to educated docs -- we should be working on educating INSURANCE companies! And the sad part is O2 is MUCH cheaper than Trex....
Oh welll....... maybe in the next century....
Hugs BD
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nani
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Re: What say you?
« Reply #14 on: Jan 25th, 2006, 12:20am » |
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People with migraines and CH often suffer from allodynia, a condition where the skins hurts. Jefferson is doing a study on it and many of us were tested in Dallas.
Damn shame. 
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Pinkfloyd
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Re: What say you?
« Reply #15 on: Jan 25th, 2006, 2:33am » |
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Here's my thoughts...FWIW
Probably not clusters but 02 is worth a try to see if it helps "whatever" headache condition she has.
Just the act of sitting down and breathing slowly and deeply, oxygenating the blood might help a great deal.
All the stress, physically and emotionally, could be harmful to the baby and to her own immune system. If I were her doc I'd probably suggest putting her into the hospital for some in-patient care to help reduce the stress levels and get a good handle on a "good" medicinal schedule. Something I don't believe she is on right now.
We don't know however, what the history is of what has been tried, or other possible complications that we don't know about.
Could be the doc firmly believes (and he knows more about the history than any of us) that she doesn't have clusters and 02 won't help at all, is trying to help asap and doesn't want to waste time on 02. She never said he diagnosed clusters. If he did, and doesn't know about 02, she should print out the 02 info here and go knock loudly on his door.
GSK says don't use it if pregnant without consulting with a doctor....well, she has done that ;-(
Although, again, thats probably the last thing I'd suggest but it might be the last thing he has to offer.
She mentioned sweating as the headache was beginning......in my experience, that is just the opposite that I feel when I used to have clusters begin. I'd begin to freeze.....and then warm up as the cluster got worse. By the end I'd be sweating and ripping off layers, but this sounded a bit different.
She mentions eating OTC's like candy. Can't sleep unless "drugged throughly" which I assume means taking so many OTCs and painkillers or different sorts that her ears are probably ringing like church bells. If she's doing that many OTCs each nite (she sleeps, or tries to, every night) then a large part of the headache might be rebound related.
She very well may have fibro and in trying to treat that pain in the beginnig, has caused some additional problems. It sounds to me like she's spiraling out of control, pain-wise and medication-wise. Again, a good reason to be in-patient for at least a few days to try to calm things down a bit and get back to a baseline pain.
There are pain meds she could be using, in a hospital setting, that would be more effective than OTC's with a triptan kicker.
3 young kids at home. Pregnant. Hormones all a flutter. Stress levels peaked.
She could have any one, or a combination, of those things she had previously been diagnosed. Just becuase they weren't able to control it properly, doesnt mean they were wrong on the diagnosis, just the treatments. Then the treatments, plus her own OTC treatments, may have complicated things.
I think the medical profession, has let her down, or just hasn't been up to the task. I'd suggest she make another appointment and bring her husband into the exam room with her. If she's being treated like "an emotional women" that the doc is just trying to get out of the office, he should start pounding on the exam table and demanding immediate attention. His wife's life and the life of her unborn child may be at risk.
just my 5 cents worth
bobw
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chewy
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Quote:| We need universal health care in this country |
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I look forward to my health care being guided by another federal bureacracy. We can make John Kerry the health csar and all get free appendectomies to treat our CH.
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Azrael
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Re: What say you?
« Reply #17 on: Jan 25th, 2006, 7:57am » |
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Quote:My heart will palpitate and then the pain starts.
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Did this line raise anyone else's eyebrow? It did mine for two reasons:
#1... Okay, maybe she just meant her heart races when the headache starts, but if she really means it palpitates before the headache starts, it could be a sign of a underlying heart condition.
#2... Triptans, especially sumatriptan, aren't recommended for people even suspected to have any sort of cardiac condition. Could be very bad indeed.
PFDAN........................................ Drk^Angel
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Kevin_M
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Re: What say you?
« Reply #18 on: Jan 25th, 2006, 8:17am » |
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Yes, I'd also feel the Imitrex definitely wrong due to probably not clusters but considered the palpatations, sweating, shortness of breath before a headache an anxiety type attack, she mentions that only before and during the headaches that last all day sometimes and she's tried countless antidepressants, also a feature of fibro. Could be heart too, though.
Quote:When I begin to get a headache I notice that I begin to sweat and get short of breath. My heart will palpitate and then the pain starts. It seems to last all day sometimes.
For the first year I was told that I was only depressed. After that they checked for a lot of things and I was diagnosed with arthritis, thoracic outlet syndrome, fibromyalgia, myofacial pain syndrome, etc. I have been sent to physical therapy, tried heat and cold, tried countless antidepressants, |
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*just a thought concerning the trex while pregnant; her doctor may have discussed the risks, liabilities, potentialities with her but she's opted to use it if necessary anyway do the extent of headache pain that she feels. In that case, it would be none of my business.
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| « Last Edit: Jan 25th, 2006, 11:13am by Kevin_M » |
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chewy
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Bottom line is it seems CH might be the least of her problems. Lots of bells and whistles going off with her post.
Not being a doctor I dont know what those bells and whistles signify.
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