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Topic: Desperate to manage the pain (Read 389 times) |
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middlecook
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Desperate to manage the pain
« on: May 26th, 2003, 5:58pm » |
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Hi,
My spouse has had cluster headaches, migraines, whatever they are since giving birth to our first child. Since then they at times have been bad (i.e. Imitrex does not touch it), but lately they have become unmanageable with my wife passing out, having the left side of her body go entirely numb. She has been constantly hospitalized over the last two weeks and when she is at home, she so far has not been able to be left alone. The doctors have done MRI's MRA's CAT Scan, EKG's, EEG's just to name a few of the test. We started going to a new neurologist last week who prescribed, senate??, but the medicine has been discontinued. We are desperate and do not know where to turn except for God.
Any thoughts or advice would be appreciated.
Thanks
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Wendy the Brit
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Re: Desperate to manage the pain
« Reply #1 on: May 26th, 2003, 6:14pm » |
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Middlecook
I don't know the drug you describe but I am sure someone here will. It sounds to me like the first thing you must get from the neurologist is an accurate diagnosis of what headache syndrome it is. There are quite a few and many share some of the same characteristics as CH. It may be worth you checking all your wife's symptoms against the cluster quiz, and if it doesn't match, having a look at the links to the other types of headaches to see if they are a better symptom match. If it is clusters and the drugs are not working, most people here will recommend trying O2. The good news is that many of the other severe headaches are relatively easy to treat in comparison with CH which is a bit of a resistant bastard.
I will alert the other board to see if anyone there can help more
Wendy
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Roxy
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Re: Desperate to manage the pain
« Reply #2 on: May 26th, 2003, 6:19pm » |
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middlecook, I quoted your post over in the general posts. Maybe someone over there can help you. To me what your wife has doesn't sound like ch's, but it sounds like you are desperate for help.
I've never heard of senate...they only drug I can think of for ch's that has been discontinued is sansert. Did the neuro diagnose your wife with ch's?
Hope we can help in some way,
Tracey
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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middlecook
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Re: Desperate to manage the pain
« Reply #3 on: May 26th, 2003, 6:27pm » |
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Thanks,
Yes, the neurologist diagnosed her with CH. Yes, it was sansert. As Jonny put it, maybe it's not CH. We took the quiz mentioned and it said "See a neurologist" Well we did that and just are trying to find some
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Wendy the Brit
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Re: Desperate to manage the pain
« Reply #4 on: May 26th, 2003, 6:45pm » |
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Middlecook
Roxy has moved your thread over to the main board as people often go there more regularly while they visit this meds board occasionally. If you mark your thread on the main board with "Notify replies" you will be alerted via email when someone posts a reply.
W the B
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MarkHW
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Re: Desperate to manage the pain
« Reply #5 on: May 27th, 2003, 3:30pm » |
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I'm not a neuro so I'm not going to try and differentiate between cluster and complex migraine (I've had both) - maybe she is having both.
I have taken Sansert. It was the only thing that worked for me, but it was discontinued. I was told that migranol is a substitute.
Good luck!
Mark
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The clusterhead formerly known as williamsmh.
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Wendy1
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Re: Desperate to manage the pain
« Reply #6 on: May 27th, 2003, 9:40pm » |
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Middlecook
I am so very sorry for your wife. We all sympathize with her and especially you.
I am 38 and have had clusters for 20+ yrs. My poor husband feels so helpless. TRUST ME there is not much you can do except be there.
I know it is hard to watch us writh in agony, but for me, it is somewhat of a comfort knowing someone is with me. My husband will ask once or maybe twice (no more), if I need anything. We both know that we just wait it out. If it's really, really bad, we speed to ER. Sometimes I can tell if it's going to be a bad one before it even gets to 10, and I head right to ER.
This has NEVER, EVER happened to me before, but I had Verapamil 360mg twice daily break my cycle this time!!!!! I thank God!!!!!!!!!! (Although I am still taking 240mg at nite right now).
I have also found some pressure points about an inch behind the ear on the affected side, running downward. I'm not sure if it's really good for you or not, but I have found some relief while waiting for pain meds to kick in.
Just being there is about all you can do.
Good Luck!!!
Wendy
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Charlie
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Re: Desperate to manage the pain
« Reply #7 on: May 30th, 2003, 6:05am » |
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Welcome and we know the kind of hell one can go through. Here's something that costs nothing, is harmless, and it worked wonders for me. Others here have had success with it as well. Give it a try and good luck.
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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middlecook
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Re: Desperate to manage the pain
« Reply #8 on: May 30th, 2003, 6:53am » |
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thanks I will try it.
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