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Topic: New to the Board and New to CH (Read 734 times) |
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Bookworm
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New to the Board and New to CH
« on: Sep 20th, 2004, 10:47pm » |
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Hello. I am new to the board and new to Cluster Headaches. I am thirty-six years old and a few weeks ago I was treated in the ER. they thought I was having a stroke. Actually, I was having my first Ch and it has not gone away. It has decreased in pain, but it is still there. My dr. consulted with a nero and all the reports from my tests done in the ER and they concluded very quickly that it was CT. I am taking Anexia and Phenegran. When I was in the ER they eventually put me on Oxygen and something for head ache pain. I am not sure what it was. I have hours of intense pain and then I have times of just pain. Even on the pain meds I still feel the pain. One of my other complaints is my eye. The pain is focused on the right side of my head and my right eye constantly waters and hurts. the swelling is quite annoying and light sensitive. Do you have any suggestions for what I can do for my eye? I have been reading the board off and on for a few days and gathering information for my DR.
I am fortunate that I do not have the headaches at night. They tend to be alive during the day. Does the numbness in the face subside?
Well I will save more questions for next time. I could ask a million questions.
Thanks for the help. I am so glad I found this site.
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Kevin_M
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Re: New to the Board and New to CH
« Reply #1 on: Sep 21st, 2004, 8:25am » |
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on Sep 20th, 2004, 10:47pm, Bookworm wrote:I have hours of intense pain and then I have times of just pain.
.......Does the numbness in the face subside?
.....Well I will save more questions for next time. |
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Wendy, you around?
Kevin M
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JJA
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Re: New to the Board and New to CH
« Reply #2 on: Sep 21st, 2004, 8:39am » |
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You ask tough questions. I don't think most of us have a tearing eye all of the time, just while we are having an attack. I don't recall anyone complaining about numbness of the face, so I can't help you there either. Some of your symptoms sound atypical for CH. If you are certain that the diagnosis is correct (how did you do on the Cluster quiz?) then I recommend asking your doctor to try more traditonal Ch meds first, like verapamil or even prednisone if your pain is unbearable. Pain meds aren't effective for most Ch'ers.
-Jesse
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Bookworm
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Re: New to the Board and New to CH
« Reply #3 on: Sep 21st, 2004, 9:15am » |
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yes I have noticed from reading the board that all of my symptoms are not common. My DR. explained the nerve stimulation as part of the attack. Which they feel is the reason my eye is so bothersome. The eye is continuos and the meds do not help the intense pain. I have been to an eye specialist that has concluded with the same theory. he said the eye is very sensitive and the intense attacks that I have been having are the reason my eye is the way it is.
They are looking at others meds that I can take. I have allergic reactions to a lot of meds and they are being very careful about what they start me on. so I am suffering through this until they find something that I can take.
Numbness might not be the right word. I feel like the headache is still there. I can feel it. It is not intense, but it is still there. I have this tingly feeling across the right side of my face and it begins in my eye and works its way back. Then I get the blinding pain. I can be still when it begins and just consentrate on trying to breath, and as the pain increases this is more difficult.
I have had catscans, MRI, and xrays, and tons of blood work. They even did a spinal tap to see if I had some viruses going on. I have been through the ringer and at the same time between the pain trying to maintain my life. This has not been easy and being imobolized is very difficult for me to maintain my family, professional, and academic lifes.
When the pain gets to intense I have been advised to go to the ER where they have shots of a medicine that starts with a T. I apologize that I can not remember the name. I am in so much pain at the time they could give me anything and I would not care. They also put me on oxygen and knock me out. that is the only way that i get through them.
They have determined that I am not having strokes, tumors or any other brain related issues, the nero and my family dr. are convinced that it is CH, and nothing else, not even migraines.
I have given the CH's an existense that is always there. Instead of being on my shoulder like a consisous it lives on the side of my head.
I just need some advice on coping and someone that can relate. That has been my biggest challenge. I do not want to take pain meds all the time. If I need them that is fine, but most are highly addictive and that scares me. I do need something when I am in pain, but what I have is not strong enough. And I spend more time at the ER than I do at home.
Thanks for your reply and sorry for babbling.
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floridian
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Re: New to the Board and New to CH
« Reply #4 on: Sep 21st, 2004, 11:08am » |
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An MRI or CAT scan might be a good idea - some of what you describe is classic cluster headache, but the persistence of the pain and numbness may be pointing to trigeminal injury caused by something else.
Cold compresses might help with the swelling on the face and eye.
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JJA
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Re: New to the Board and New to CH
« Reply #5 on: Sep 21st, 2004, 11:10am » |
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I don't think "strong enough" is an issue with CH. For most sufferers nsaid and narcotic pain medicines just don't work. There are some exceptions however. You should definitley get oxygen for your home if that works for you. Others will advise you about that. Are you allergic to triptans (Immitrex etc.)? That would be a good place to start for an abbortive therapy.
Just about everone here can relate to you. Most of us have been to the emergency room and had our lives come to a screeching halt because we are immobilized with pain. Like you, I have nearly constant pain (shadows) in between my attacks when I am in a cycle. I have learned to ignore the shadow until I know a real attack is coming. I can function normally and I won't give up anymore time than I have to CH.
If you have Ch, chances are it is episodic and you will be in remission soon. Also, we learn to live with CH. Sad to say, but as time passes you learn to accept life with pain. You will also find what helps you the most. I have had good results with melatonin (9mg at bedtime). I'm not sure if it would help you since you don't have night-time attacks.
I am still suspicious that it is actually CH, but if it is, you will get good advice here. Could you take the cluster quiz on the left and let us know how you did? If you have been misdiagnosed you may be suffering needlessly.
I hope you get some relief soon.
Jesse
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pubgirl
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Re: New to the Board and New to CH
« Reply #6 on: Sep 21st, 2004, 3:08pm » |
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Hi Bookworm
Sorry you are suffering so much and for so long. As has been said already, your symptoms do not really fit the classic CH symptoms.
There are a group of TAC's (TAC = trigeminal autonomic cephalgias- meaning one-sided headaches with other autonomic symptoms emanating from the trigeminal nerve) and they all have particular symptoms.
The most commonly known one, even amongst neurologists is Ch, so it tends to be the most common diagnosis.
This is not to say you haven't got Ch as that is not for me to say, but hours of pain is not CH and makes other TAC's probably more likely or possibly CH overlaid with another headache type.
One way of ruling in or out some of the other TAC's and facilitating your diagnosis would be to request an Indomethacin short course. This is because many of the other headache types are classified as "Indomethacin responsive" which (mainly) Ch isn't. It only need be taken for a few days to see if it helps, because if it hasn't worked in a week it probably isn't going to.
I seriously think it is worth a try.
It also sounds like a good idea that they are being careful what drugs they try you on as there are a couple of headache types with numbness or temporary paralysis e.g. BAM where vasoconstrictors such as the triptans (e.g. Imigran, Zomig etc) can be VERY dangerous.
The nearest TAC from your symptoms (if it is one headache type alone) would seem to be Hemicrania continua, but I would hope your neuro has considered this during your consultations.
You may wish to have a read of this link just in case
http://www.achenet.org/articles/6.php
I haven't been much help I know, but it would be very silly, or even dangerous to start spouting CH treatments at you when they could be useless/less use than other drugs or even dangerous.
Wendy
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| « Last Edit: Sep 21st, 2004, 3:09pm by pubgirl » |
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Bookworm
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Re: New to the Board and New to CH
« Reply #7 on: Sep 21st, 2004, 3:23pm » |
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Thank you so much. The information that I am getting is very important. One of my concerns is that my diagnosis came so quickly and that they are convinced this is what it is. Since reading on this site, I have been questioning the diagnosis.
I will finally see the nero(he has been working through my family dr.) later this week and will print all information out so we can start eliminating what it isn't. And get this pain managed. the ever lingering feeling is a little unsettling, but I am attempting to continue with what needs to be done before the pain is too intense.
thank you for the information. anything is better than nothing. I wish there were more sites like this.
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Kris_in_SJ
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Re: New to the Board and New to CH
« Reply #8 on: Sep 21st, 2004, 8:41pm » |
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Hi and Welcome,
Let me share my first "cluster experience" with you. I happened to be 40 yrs. old at the time (though I'm not sure that's relevant). See if it sounds at all familiar ...
It was a Friday evening. I was relaxing, reading a book, suddenly had a sharp, severe pain behind my left eye. The eye became very bloodshot and started to droop. It was Friday night - no way I was going to disrupt my weekend! Monday, the eye is still red, droopy, and the pain has spread to my temple and upper jaw - It's not unbearable, but I'm starting to worry 'cause aspirin just isn't getting the job done.
I go to my eye doctor, who immediately gets me an appointment with a neurologist because he's sure I've had a stroke. The neurologist gives me a list of probable causes ... I have a brain scan and MRI ... negative. I'm taking a number of different pain relievers (none of which work). Over the course of 10 weeks, the pain is steady, though it escalates several times a day - finally it stops. A cause is never found - the neurologist finally called it "Trigeminal Neuralgia - Virus Induced."
5 pain free years later - BAM - classic Episodic Cluster HA Syndrome.
That first undiagnosed chronic pain thing turned out to be my first cycle.
If you have CH's, forget pain meds, they won't work.
Read up and keep a diary. Here's my favorite med link:
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Keep posting!
Hugs and wishes for many PFDAN!
Kris
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Bookworm
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Re: New to the Board and New to CH
« Reply #9 on: Sep 21st, 2004, 10:05pm » |
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Oh my God! Yes. This is me. My pain escalated within a few days to the point that I was having trimmers and could barely speak. I was lathargic from exhaustion and they had determined I had a stroke until all my tests came back negative. I am almost a month into it,and the pain meds do not help with the intense flare up, but do seem to mask the smaller episodes.
However, they never have found a virus. My dr. did claim that some cases of CH do come out of viruses for what ever reason, but my glands particullarly in my neck are swollen. All of my bloodwork comes back negative as well.
Thank you I will check out the site you recommended and i am keeping a detailed journal.
I am so thankful for all of the information that I have recieved. I felt as if I was loosing my mind until I logged on.  As if there is something in my head that was taking over. it is nice to know that there are others out there that are living with this and there is some way of coping.
Agian- thank you
Jody
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thebbz
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Re: New to the Board and New to CH
« Reply #10 on: Sep 22nd, 2004, 7:14pm » |
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Hey there BW!!
During some of my episodes the shadows vary somewhat in intensity. It is possible these could be shadows, your constant pain. Just a thought! I as well could describe some topical numbness during an attack on the effected side, although it does become irrelevant when fully involved. Hope this information can help. CH hurts more than any explanation but remember it will not Kill ya. Good luck with the neuro, you do need a one on one with him or her.
Keep up the good fight.
BB 
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