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seventh
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process after being diagnosed?
« on: May 4th, 2007, 5:17pm » |
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Hello, im 17 years old from Israel, after reading the symptoms, and learning abit more about CH, i am certian that i suffered from them in September, I would like to know abit more of what happens after i go to a neuro and explain him my symptoms, will he need to wait for me to get "hit" so he'll do something?
i am very interested in knowing what will be the "next step"
Thanks!
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| « Last Edit: May 4th, 2007, 5:18pm by seventh » |
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Rosybabe
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Re: process after being diagnosed?
« Reply #1 on: May 4th, 2007, 5:37pm » |
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HI Seventh!!
welcome aboard!!
Your Neuro would probably order some tests, like MRI and blood count to be sure there is nothing else wrong that maybe causing the headaches..
make sure you explain to him with very detail about your pain, will help of you fill the survey on the left and show it to him..
Once He gets the diagnosis (whatever that would be) He will tell you what medication you are going to take when the pain comes again...
I do not think he will wait until a hit comes, you rather be prepared with a preventative, so the cycle does not even come for you..
write down everything you remember about your cycle, time of day, what you ate, how long it hurts, that sort of thing, it will be very helpful if you have a headache diary..
Hope everything goes well for you!!
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Guiseppi
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Re: process after being diagnosed?
« Reply #2 on: May 4th, 2007, 5:39pm » |
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The first step of course is confirming the diagnosis. If it's true you have CH, get him to prescribe you oxygen! It has proven to be a very effective abortive for many people on the board. It must be started at the first twinge of a headache, using a non re breather mask. That is a mask which does not allow any outside air in, you breathe only pure oxygen. You will need a high flow regulator, one capable of delivering up to 15LPM. For me it will abort a headache in less then 10 minutes.
You will want him to prescibe imitrex injectables, the pills take too long to get into your system. The nasal spray didn't work for me although it has worked for others, the injectables are the miracle relief for me when all else fails. I still use the oxygen first, the imitrex only if the oxygen fails.
Then you need to talk to him about a preventative. That is something you take during your cycle to reduce the frequency and intensity of your head aches. I use lithium, others use topomax, there are many to read about on the left side of the board. You have much reading to do as even most neuros don't know much about the condition, you will be your own best advocate. Keep asking questions we'll help all we can.
Guiseppi
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seventh
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Re: process after being diagnosed?
« Reply #3 on: May 5th, 2007, 4:47am » |
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Thanks for replying, although im abit scared of giving him online survey's ive filled, because as i am 17, i am already diagnosed with insomnia, anxiety and A.D.D., for that, im being treated by Valium(Diazepam), Klonopin(Clonazepam) and Ritalin.
i dont want doctors to think that im making it all up, and afraid they wont believe a word i say.
i am afraid he will put me in a "pain clinic" or something waiting for my "hit" to come, as one of the first things i tried to do while having a "hit" is to lock my door so none of my family could see me in this position.
There is no chance that he'll just tell me to come to him when the pain starts again?
the reason i didnt went to a doctor when the cycle was "kicking in" was because i am afraid of his reaction, and that he'll put me in a hospital or something.. so id just like to know more of the process of what happens after i tell him all of my symptoms..
BTW, is it possible to have a "hit" every day or two, not in a specific time, but at night?
Thanks again!
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GrandPotentate
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Re: process after being diagnosed?
« Reply #4 on: May 5th, 2007, 10:19am » |
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Everybody is a little different - you'll find that as you follow this site.
My hits don't always come at the same time. About half come in the evening, usually when I'm starting to relax at the end of the day. The others come at all kinds of random times, for no reason at all. Some days I'll get four hits, occasionally a day with none. Keeps me from getting bored.
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Rosybabe
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Re: process after being diagnosed?
« Reply #5 on: May 5th, 2007, 1:36pm » |
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if you have CH, is no wonder why you have been diagnosed with all that too (insomnia, etc)...
you have to talk to your parents, you can't be facing this alone, let them know about your fears...
as far as the timing of pain, I am very regular, almost always at night, at the same time every time, like an alarm clock, sometimes one hit sometimes even 4 or 5 depends of the stage of the cycle, but with CH nothing can be predictable....
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LeLimey
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Re: process after being diagnosed?
« Reply #6 on: May 5th, 2007, 2:17pm » |
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Hi seventh,
Its nice to meet you I'm just very sorry it is here.
As the mother of a child sufferer of CH as well as having CH myself I really do feel for both you and your family, they must be worried sick about you too.
Whilst I can understand your fears over what ishappening to you the best advice I can give you before seeing a neuro is to keep a very detailed diary of everything you can think of.
What happens when you get an attack
How long it lasts
What symptoms you have while its lasting and how the pain feels and WHERE you feel it (Very VERY important)
What times of day or night you get hit at, What you have eaten and drunk (also very important to log drinking habits and I don't mean alcohol!!!)
In short anything that could be relevant IS relevant.
There are over 600 headache types and symptoms for some overlap.
CH for instance belongs to a group of headaches called TAC's. Trigeminal Autonomic Cephalalgias and there are two other types which are very similar called SUNCT and Paroxysmal Hemicrania. The pain is equally as bad as for CH but the difference is how long the attacks last and the meds they respond to.
Meds for one condition can, quite literally, kill if given for anothoer so getting an accurate diagnosis is of paramount importance and I just cannot stress that enough.
The more info you can give to your neuro the better position he is in to help you so please don't think anything maybe insignificant, it won't be to him!
Come back and let us know how you get on okay?
Helen
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Cathi04
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Re: process after being diagnosed?
« Reply #7 on: May 5th, 2007, 4:25pm » |
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Hi Seventh,
I'm sorry you are suffering, but so glad you found this spot.
You have gotten some very good guidance so far. You might find more help here than from a Neuro, since there are years of experience here!
If I were you, I would print out information you see on the side here. Specifically medical info and traits, take those with you to the Dr. Demand 02- it IS your first line of defense. It works wonderfully for most CH'ers, hopefully it will for you as well. Then, a preventative, and something for those hits that just don't give up.
Aside from that, please try not to be afraid. Although it is a horrendous condition, it is commonly stated that people do not die from CH.
Do NOT hesitate to see that neuro..go fast, and let's begin to put you back together. CH does NOT define who yuo are- it is an affliction! Please do not let the beast run yuor life!
We're all here for you, Seventh, and we will help in any way possible.
Hang on tight....don't worry about Sept for now, just get your artillery handy, and let us know how you are doing!
Clusterheads are the strongest people in this world! Remember that!
Wishing you many PF days!
Cathi
(PS- Thanks, Rosybaby, for the head's-up) 
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Batch
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Re: process after being diagnosed?
« Reply #8 on: May 5th, 2007, 4:38pm » |
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Shalom Seventh,
If you think you have cluster headaches, have made an appointment with a neurologist, and you've come to CH.com, you've taken the right steps. And no, you don't need to wait for the next attack for him to make a diagnosis.
Next steps should include reading through the info links at the right side of this page if you've not already done so. In particular, take the "cluster quiz". It will not provide a doctor's diagnosis, but it will come very close. When you finish the cluster quiz, print out the survey so you can take it with you to your neurologist when you see him. The other posts that suggest for example, keeping a log, is a great suggestion that will help the neurologist help confirm if you are a cluster headache sufferer or have another condition causing the headache pain.
You're not alone. There's always someone here on the ch.com boards or in the chat room at
http://www.clusterheads.com/cgi-bin/gtchat/chat.pl
The diagnosed as a Cluster Headache (CH) sufferer is defined by the International Classification of Headache Disorders (ICHD-II) in the following:
3.1 Cluster Headache
Attacks of severe, strictly unilateral pain (pain on one side only), which is orbital, supra orbital, temporal, or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. The attacks are associated with one or more of the following, all of which are ipsilateral (same side as the pain): conjuctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema (swelling). Most patients are restless and agitated during an attack.
The link to the International Classification of Headache Disorders (ICHD-II) follows:
http://216.25.100.131/upload/CT_Clas/ihc_II_main_no_print.pdf
There are two types of treatment/medications for cluster headaches. They are called preventatives and abortives. Both are covered in the cluster headache survey. Preventatives keep you from having the attacks, reduce the frequency of the attacks, reduce the intensity of the attacks, or any combination of the above. Abortives help you "abort" or end an attack.
If you do have cluster headaches, you may have already discovered that over the counter pain medications like aspirin, ibuprofen, or Tylenol don't work.
If you're having a hard time with the headaches while you're waiting for your appointment with the neurologist, there are a couple things you can try. What triggers the attacks gets complicated to explain and for the most part, is not fully understood. The most common source of the pain is associated with dilation of the blood vessels that surround the trigeminal nerve. Anything you can do to constrict these blood vessels or reduce their dilation appears to help.
I've found that wrapping an ice cube in a paper towel, wetting it to increase the heat transfer, and placing it on top of the head just off center on the "hit" side above the ear helps. It's cold at first and may be a bit painful, but as the scalp cools, the pain associated with the ice and the cluster headache begins to subside within 2 to 3 minutes. Some folks drink Red Bull or a lot of strong coffee. It these don't work well enough, you can try going to the local fire department and ask an EMT to give you 100% Oxygen (O2) with a non-rebreather mask and a flow rate of 10 to 15 liters/minute. Oxygen is the first choice in abortives for most cluster headache sufferers as it works for most of us most of the time. Some doctors have use 100% O2 as a means of confirming a cluster headache diagnosis. You can find more about using medical O2 as a cluster headache abortive at the following url:
http://www.artonio7.com/o2.pdf
Hope this helps. Don't be afraid to see your neurologist and keep us posted.
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| « Last Edit: May 5th, 2007, 5:01pm by Batch » |
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BB
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Re: process after being diagnosed?
« Reply #9 on: May 5th, 2007, 9:41pm » |
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Hello Seventh,
Sorry to hear that you have this headache plus many other conditions and that you are scared and worried.
However, dont worry about going to the neurologist and about bringing along the printout of the cluster quiz. The neuro wouldnt wait to see you having one to make the diagnosis. Clusterheadaches is a clinical diagnosis that means the diagnosis is based on clinical symptoms that the patients have, not by physical examination like other conditions.
The neuro will ask you a whole host of questions, many would be similar to those on the quiz and then will make the diagnosis based on your answers. On the first consultation, he may hold off giving you a concrete diagnosis but will order CT scan, MRI and blood tests to make sure that nothing else is playing in the background.
Rosybaby is right with her recommendation that you should share this with your family. Can you talk about your feelings with your parents/friends/relatives? Maybe take someone with you when you go to see the neurologist. That will give you the moral support that you need and they can help remembering things for you as well. One very often forgets half of what the docs say in a consultation.
It is very common that when Chers take a hit, they go into hiding. No one really wants to display to public such pain nor wish to show their vulnerability. If it is comfortable for you to deal with it that way then be that way. However, it doesnt mean that you should keep it a secret. Sharing your feelings to people who understand and can support you is tremendously therapeutic and will make you feel a lot better.
I have said this many times: there is only one thing worse than CH, and that is being alone with CH.
Hopefully the neuro you are going to see is experienced enough about CH that once he confirms the diagnosis, he will prescribe you oxygen, verapamil and imitrex injections or nasal sprays and maybe some prednisone, without you having to ask for them.
So the next step is
1- Be confident, go to the neuro as soon as you can, tell him everything about this headaches, bring friends or family along if you wish.
2- If he orders MRI, CT scan and blood tests then get them done as soon as possible
3- See what he says and what he would prescribe, come back and post here so that we can help you if there is any problem
4- Dont worry about your other medical conditions for now, focus on one thing at a time, get yourself diagnosed properly with this headache first. Its very common that CHers have insomnia and anxiety, there appears to be some clinical links between these conditions.
Take care, and painfree wishes to you. Please let us know how you go.
Hugs
Annette
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| « Last Edit: May 5th, 2007, 9:41pm by BB » |
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BB
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Re: process after being diagnosed?
« Reply #10 on: May 5th, 2007, 9:46pm » |
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I forgot to add, and this is VERY IMPORTANT, if you are NOT having ANY headache or any pain now, that means you are out of cycle, then wait, dont need to see the neuro right now, because he wont be doing anything.
People with episodic clusterheadaches can have remission time sometimes of a few years in between cycleS where they are completely free of headache and dont need any medication.
Therefore, if you have any types of bad headaches now, then go to the neuro now. If you are only wondering about the cycle you had last Sept, whether they were CH or not, but are currently headache free and painfree, then DONT WORRY ABOUT IT until it returns, if it does. It may be years if its CH and if it wasnt, it may never come back.
Hope this helps.
Annette
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Re: process after being diagnosed?
« Reply #11 on: May 6th, 2007, 2:50am » |
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Dang ... sorry ... hopefully it was a fluke and will never happen again  Try not to worry too much about it returning. And remember, those people in the hospitals are there to help you ... don't be afraid of them.
Best Wishes
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seventh
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Re: process after being diagnosed?
« Reply #12 on: May 6th, 2007, 7:08am » |
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Thanks for all the reply's, it really does help me
The thing is, that even tough my cycle(if it is ch) is over, but i am having annoying migraines on the left side too (that was where the Sept. pains were, is this possible migraine and CH on same side?), so thats the reason i want to see a neuro, but these migraines im having now or whatever they are, is "fun" comparing the pain i had in Sept. , so i just thought about bringing it up to him as well, what do you think?
Thanks again!
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BB
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Re: process after being diagnosed?
« Reply #13 on: May 6th, 2007, 9:07am » |
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Yup, its possible to have both migraines and cluster and Yup they can affect the same side, although migraine pain is different and can affect the whole head.
If you have migraines now then do see the neurologist. Medications that help migraines are often used for cluster as well.
Hopefully its just migraine you have and not CH.
Good luck with it all and let us know how you go.
Annette
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seventh
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Re: process after being diagnosed?
« Reply #14 on: May 6th, 2007, 10:01am » |
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Hi, i dont think that what i had before was a migraine pain, as it was very different from the pain i have now, before it was on only one side, red eye, tooth pain(well, maybe i just tighten them real hard and not noticing), very very VERY strong pain, that passes after half an hour or so, very intense, "fast comes, fast goes", moving myself all over the room , although the migraine pain makes me want to lay on my bed, closing everything and make the room dark and it lasts for about 2-4hrs.
What do you think it might be?
Thanks(:
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Rosybabe
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Re: process after being diagnosed?
« Reply #15 on: May 6th, 2007, 4:25pm » |
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I am not a doctor, but yes, it fits the description of a migraine...
Good luck Seventh, go see the Doctor!!
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