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Topic: New and in Need of Support (Read 333 times) |
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screamer
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New and in Need of Support
« on: Jul 18th, 2003, 10:30am » |
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I can't believe it took me this long to try and find support in July 1993 I had twins and immediately after that trauma i lost my peripheral sight, this started what I have now been diagnosed as my first CH, first it seemed i would have 2 annually, but it has increased to almost one every week, can't function, can't get the help I need, nothing seems to work, no one seems to care, everyone thinks i am making the whole thing up, I am well know in at least 3 local hospitals, that assume I am coming only for the drugs at this point b/c I am so regular. Can't afford another doctor. At my witts end.
I feel like giving up, no relief, The eye stabbing pain is unbearable to say the least, Please someone give me some comfort, just knowing there is someone else besides me dealing with this curse makes me feel sane.
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echo
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Re: New and in Need of Support
« Reply #1 on: Jul 18th, 2003, 10:53am » |
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Sorry to read that the beast has selected you for his attack. We are here to listen, respond, support and care. I've been there and do truly understand what you are dealing with.
Hang in there.
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Margi
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Re: New and in Need of Support
« Reply #2 on: Jul 18th, 2003, 11:00am » |
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Sorry, but ONE attack per WEEK? Sure doesn't sound like clusters to me. Please help yourself by taking the cluster quiz at the left here and then go get a second opinion.
If what you're experiencing is migraine (and by the frequency - or lack thereof - that could very well be what you're going through), inhaling oxygen at onset of attack can also help you. Please read and learn from the buttons at the left and then get a re-diagnosis from a neurologist. It seems that cluster headache is becoming a catch-all diagnosis for otherwise unidentifiable head pain. Help your doctors to help you by educating yourself first ok? Read the Cluster Traits. Take the Cluster Quiz. Tell us what your typical "attack" is....duration, intensity, what meds you're on, do you wake in the middle of the night with your weekly attack?
Not trying at all to ridicule you, just trying to help you find some answers and relief from your pain.
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screamer
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Re: New and in Need of Support
« Reply #3 on: Jul 18th, 2003, 11:31am » |
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on Jul 18th, 2003, 10:53am, echo wrote:Sorry to read that the beast has selected you for his attack. We are here to listen, respond, support and care. I've been there and do truly understand what you are dealing with.
Hang in there. |
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Thank you so much echo, your encouragement helps so much, nice to know someone cares, Made my day (smile) thanks for listening.
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Mark C
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Re: New and in Need of Support
« Reply #4 on: Jul 18th, 2003, 11:37am » |
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Hello,
Sorry about the head, I know how you feel. Correct diagnosis is paramount to an effective HA prevention/abortion program. Look here for the quiz Margi refered to, it's a good place to start. Here is a good HA log to track your attacks, use it. Get your self to a Neurologist as soon as possible. Educate yourself and your doctor if necessary with information from this site and the O.U.C.H. site. Good Luck.
PFDAN's
Mark
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CathiP
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Re: New and in Need of Support
« Reply #5 on: Jul 18th, 2003, 11:49am » |
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Hey, Screamer-
What Echo said- welcome.......sorry you're here.....glad to meet you. Mark has posted some excellent links for you, here. So many here can relate to your pain......stick around, educate yourself, and print out some of the "stuff" to share with your doc.
Wishing you PFDAN,
Cathi
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Hooter
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Re: New and in Need of Support
« Reply #6 on: Jul 18th, 2003, 12:45pm » |
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Hi
I echo what those above have said , I'm sorry you are in such pain and getting so frustrated with the medical profession.
It is crucial you get the right diagnosis as a severe migraine can very closely mimic a CH attack (I get both so I know) There are indicators in what you say that suggest migraine to me more than CH-these are the frequency of the attacks, the vison disturbance (although that can happen with CH, it is a classic sign of migraine) and the fact that it happened after childbirth.
For many women, migraine is triggered by hormonal fluctuations, and CH does not seem to be.
The good news is that migraine and CPH, and many other headache syndromes are much more readily treated than CH IF you get the right diagnosis.
You don't say what you have tried and what has not worked for you. It reads as if you have been taking painkillers of different types, which if this is the case would be why you are getting this 'reputation'. Most migraine and Ch sufferers don't find painkillers effective, better to tackle the problem, not just the symptoms. For me a type of triptan called Zolmitriptan (Zomig) is absolutely superb for clearing migraine. CPH can be cleared as far as I know with enormous effectiveness with ??Indomethican?? (have I got that right folks?)
So, the upshot is, you MUST get the right diagnosis first, either by doing the quiz/reading/self diagnosis then following this with seeing a good neurologist or doctor or get to a neurologist as fast as you can if your doctor is being unhelpful.
Hope this all helps. Keep us posted and I pray for you that this IS migraine as it is so much easier to deal with.
Hooter
P.S. My migraine ramped up into overdrive after childbirth and I didn't have a single attack during the whole 9 months of pregnancy!
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screamer
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Re: New and in Need of Support
« Reply #7 on: Jul 18th, 2003, 3:15pm » |
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Margi, I took the cluster quiz, I answered no to questions #1,3,5,6,7, 15, so I am not real sure what that tells you. These are the drugs I can remember taking to no avail, Oxygen, Imitrex (self-injections), Maxalt, Amerge, Demerol, Prednisone, Pamelor, Depakote, Midrin, Nubain, and one time in the hospital the gave me Reglan in combination with something else IV) None, and I do repeat None of these gave me relief except for the pain killers which helped me to sleep. When I say no relief, I mean didn't even begin to touch the pain that I was experiencing. I am sure there are some meds that I have left out just because my memory fails me. But I am eager to find a preventative med that could help. Haven't received much help from my neurologist, am seeking a new one as we speak. Will try to explain Headache to give a more accurate description:
at times I wake out of sleep with excrutiating eye stab pains in usually my right eye, the pain seems to be directly behind the socket, I drip from that eye constantly, my nostril on that side also drips without ceasing, my cheek on that side feels swollen, numb,and my eyelid does droop (noticeably) , I seem to have 2 kinds at times I get halos before I sleep, which in minutes I get hazy vision, blurred so terribly that I am unable to see anything, tearing from both eyes and pain between the bridge of my nose, itching in both eyes,regardless of which type headache I am unable to be still for any reason, it is like torture, it took me 30 minutes to get a CAT scan because I was unable to lie still and every HA I am sensitive to light, I can predict a HA every menstral cycle, but I also have them spontaneous, they are stronger than they have ever been before and they last longer, usually it takes me 3 days of complete rest to restore my sight and be HA free, before I started drinking tons of water they would linger on for weeks, so much so that I would roll right into another episode before I had the chance to finish the first, I have learned to sort of control them so that they no longer last that long. Thank God, I do know that sometimes I feel I have both Migraines and Clusters, except for the fact that I can't be still on either HA's. Sometimes I can be sitting at my Job and am completely fine and bam from nowhere here she comes and I have no idea why, but when she comes she hits hard and within minutes I am on my way to the emergency room. Whatever it is it is taking over my life and I feel I can collect disability, I have missed several days of work each week for a month and a half due to these HA's so I do know I have to find help or I will be out of a Job. My case seems to be a peculiar one, and I think that is why I have had so much trouble being diagnosed correctly. Any tips would be welcomed.
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Melissa
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Re: New and in Need of Support
« Reply #8 on: Jul 18th, 2003, 5:17pm » |
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I am not of any help to you unfortunately, but I just had to say, "God I wish I could help you!!!" It saddens and frustrates me to no end when people are having head pains, no matter what they are diagnosed with! Much good luck to you finding a helpful neuro!
take care,
mel
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cathy
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Re: New and in Need of Support
« Reply #9 on: Jul 18th, 2003, 6:03pm » |
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Screamer....Sorry to read your post, hang in there.....we are all here to help you and support you through this. My husbands first cycle of clusters only happened once a week 10am on a sunday morning...go figure 
Hope things work out for you, and as a mother of twins myself, you have my sympathy... 
Cathy
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2late
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Re: New and in Need of Support
« Reply #10 on: Jul 18th, 2003, 6:57pm » |
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welcome aboard screamer! sorry to hear you gettin' slammed. people around here definately care! we're here for ya. tell me they call you screamer for a reason other than CH ;D ..........made ya smile  ..............Jack
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Opus
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Re: New and in Need of Support
« Reply #11 on: Jul 18th, 2003, 7:27pm » |
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Screamer,
Unfortunately your descriptions sound like cluster/migraine syndrome, this is a combination of clusters and migraines into one hideous beast, it is rarer that Ch and almost no DR has heard of it, I lost my links on the subject but If DRK ANGEL is around he has some information. I had sort on the problem last year which made my CH's last for 6 hours, now the migraine seem to have split completely from the CH so my Ch's only last for two hours and the migraines last for 6. The only thing I found in my research is the cluster/migraine syndrome responds to beta blocker as a preventative where CH does not normally. The OUCH site has some information.
I hope some of this helps and you are PF soon.
Opus/Paul
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