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prittyc
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Just diagnosed
« on: Aug 17th, 2004, 9:25pm » |
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 Hi all, I am a 33 year old mother of 3 ages 12-9-3. I am a stay at home mom as well. On 7-20-04 driving home from the beach my headache started. 28 days later here I am. I have been to the dr.s office for 3 visits and a ct scan. My first diagnosis was pulled neck muscles and then migraines and now today CH. I have been put on numerous drugs and now have these to mention. Zomig nasal 5mg, Verpamil 120mg once a day, prednisone 2 tbs20mg once a day, and my dr called the home care center to get me on O2. That should be done tomorrow unless insurance causes trouble. I have never been so scared in my life. My family is scared for me as well. I have recorded my headaches everyday since Aug 6th and have seen only a small pattern.
1am 5am 11am 2pm 5pm 11pm. and others inbetween. All of my pain is right sided with ear pressure and severe eye pain. I do not have water eye or runny nose but the pressure is there. My pain is tolerable as I have 3 children to deal with. I do not drink alcohol. I am a smoker about a pack a day. Trying to stop now is hard as smoking has always been a relief for other problems. I drink lots of caffiene on a daily basis and am trying very hard to add more water to my diet. I have been reading on this sight for a week now. My dr. did the diagnosis on his own and said he would refer me to a neuro in 2weeks if the O2 and verpamil doesnt seem to work. I am here looking for support. I really do feel like my family and friends think that I am crazy when an attack comes on. My children are very active in motocross and I have had attacks while out with them. Everyone just looks at me like I am nuts and doesnt understand why I complain about the pain. Thanking you in advance for your response.
Christine, VA
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pubgirl
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Christine
Sorry you are having such a terrible time. I have a small child too, and it frightens me constantly that I won't cope for his sake
Can I be nosey? (for a reason)
How long do these headaches last?
And how many headaches in total are you having in 24 hours?
Wendy
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| « Last Edit: Aug 17th, 2004, 9:32pm by pubgirl » |
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prittyc
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Re: Just diagnosed
« Reply #2 on: Aug 17th, 2004, 9:37pm » |
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Hi,
Thanks for the quick reply. My headaches are lasting 45 min to 2 hours. I seem to be having about 5 to 7 a day. When they go away I am left feeling sluggish and tired like a hangover without the headache at that point. During the CH sharp pain behind right eye, side of head behind right ear and down to right side of neck. They come on sudden and stay for their time and then go away suddenly, leaving the sluggish feeling.
Christine
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pubgirl
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Sorry Christine
Another question, sorry!. What do you prefer to do while the attack lasts?
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prittyc
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Re: Just diagnosed
« Reply #4 on: Aug 17th, 2004, 9:47pm » |
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smoking is my first thought. but I know that I need to stop that. I like to cook and have been in the kitchen as much as possible or I am on the puter playing a card game. I tried taking the lortab and butalbital and sleeping did not help me at all. Actually I could not get to sleep. I would lay in the bed and rock back and forth.
Christine
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pubgirl
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Hi again Christine
May have to disappear soon so here are a few thoughts.
The frequency of your attacks makes it sensible for you to be tried with indomethacin. All good neuros will do this with any person with multiple attacks, particularly if there are no 'autonomic symptoms' (i.e. the nose/eye running etc) This is to rule in/out a condition called Paroxysmal Hemicrania, which is much more treatable than CH.
Your GP may not that well clued up, so going to neuro for a confirmation of their diagnosis would be a good idea. The reason I say this is their comment about Verapimil. Verapimil may well probably do nothing in 2 weeks as it takes time to work, and that is also only when the dosage is right (which I bet it probably isn't!)
Also you need to make sure you get 02 at the right flow rate and with a non-rebreather mask if it is to work at all. Read up about this on here
Wendy
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| « Last Edit: Aug 17th, 2004, 10:01pm by pubgirl » |
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kimh
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What don't kill ya makes ya stronger
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Re: Just diagnosed
« Reply #6 on: Aug 17th, 2004, 10:00pm » |
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Hi Christine,
I know that it is scary (to say the least). You are going to be fine, and there is a lot of great folks here to help you when you need it 
You've done your homework and are on the right track and that is half the battle***
Keep us posted on how things progress with those meds. Best Luck
Well wishes and PFDAN
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UN_SOLVED
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Re: Just diagnosed
« Reply #7 on: Aug 17th, 2004, 11:03pm » |
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Welcome to the message board Christine.
Sorry for the reason that brought you here. 
If you ever have any questions about CH treatments or meds, please ask. If I can't help you, someone else can.
Wendy brings up a few good points:
Indomethacin is a good drug to try for at least 6 days to rule out CPH. Ask your doc or neuro about this.
120 mg of Verapmil / day usually will not help any clusterheads. Some get relief from 480, others need as high as 720 - 960 mg / day. (I can't handle that much. It can lower your BP and heart rate)
Prednisone is a good drug to use for a short time. It is usually given in a taper. Example: 60 mg/day X 3 days, 40 mg/day X 3 days, 20 mg/day X 3 days, 10 mg/day for 3 days, then disconitinue. --> Get ready for the side effects of Prednisone ! 
Zomig is a Triptan drug. There are other Triptans to try if this doesn't help, such as Imitrex.
Well...I could go on and on. If you have any specific questions, please ask.
Best Wishes,
Unsolved
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judyw
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Re: Just diagnosed
« Reply #8 on: Aug 17th, 2004, 11:23pm » |
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Welcome Christine...You are getting good suggestions and I will only add one...read all you can from the links to the left side of the screen...copy anything from OUCH that you need to share with your family, friends, and medical support...Encourage them to check out this site, too...Trial and continued trial to find what works is how it goes often...but with this family you will find support, understanding, and a place to vent...Please keep us posted on how you are doing...Emails are welcome, too...
judyw
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judyw143
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pubgirl
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Christine
Just to reiterate the comments about getting a diagnosis from a good neuro who specialises in headaches.
It could well be that you have CH as your GP says, but there are certain things about your symptoms which don't fit, and it would be bad news to go a long way down the Ch treatment route (particularly as we are not talking minor drugs here) if there is any chance you have a different condition which is more easily treatable.
The main things which don't fit are the lack of autonomic symptoms and the pain level you describe and what you are able to do during an attack. "Tolerable" isn't normally a word we associate with CH and most people wouldn't be able to play a computer card game during an attack.
I know you have to carry on for the kids, and that may have given you great bravery with the pain.
Lastly, it is unusual (though not unheard of) to get that many attacks straight away.
It is very tempting to just say "It's CH, take this set of drugs and they'll help" but that would be foolish of us.
Wendy
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Prense
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Re: Just diagnosed
« Reply #10 on: Aug 18th, 2004, 10:26am » |
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The toughest part about CH is this...
Statistically speaking, if you have CH, you are probably going to be episodic. Episodes vary with length and frequency. Do not be fooled into thinking your medication regime aborted the cycle if you stop getting attacks in the next month or so. Also, prednisone should have almost immediate results...those results will stop shortly after the pred does.
Basically, if you are 29 days into your episode, it is quite plausible that it could end at any time now on its own.
Other than that, your verapamil dosage is quite low. That is ok as you do not want to be taking more than needed. That said, the "norm" would be to increase the dosage every week or so until you get relief assuming the side effects are tollerable.
Of course, this is all done only by direction from your doctor.
Your success with O2 depends solely on the delivery method and flow rate. Make sure it is right! Typically, you will want to hit the O2 as soon as you feel an attack coming on.
Wendy is correct about tollerable. For me, 3/4 up the pain scale (kip 7- , and I am completely debilitated. I hope like hell you do not have CH!
Good luck!
Chris
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prittyc
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Re: Just diagnosed
« Reply #11 on: Aug 18th, 2004, 11:26am » |
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Thanks again for all the replies.
I personally do not want to have cluster headaches but I do want an answer as to why I am having this pain. I will continure my meds as directed. My GP said that he will send me to a neuro in 2weeks if the O2 doesnt help. When I say that pain is tolerable, I have read the kip scale and have experienced up to 7 my 2:30afternoon and 11:30 night headaches are my 7's. I try to keep busy. I dont think I will ever get used to these but am trying to take my mind off of them as much as possible. Even being only 29 days I am so tired of them and feel for all of you that have suffered for years and months. I keep saying that "these headaches are getting old, and I can't take it anymore".
I have been on prozac in the past and am not ready to go back on it, but I feel already that I am going to have to give in. Thanks again for all the support.
Christine
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Kris_in_SJ
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Re: Just diagnosed
« Reply #12 on: Aug 18th, 2004, 1:40pm » |
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Hi Christine,
Glad you found us, but so sorry you had to. As you've already seen, there's a ton of support and a wealth of info on this board.
I'm curious as to whether the Zomig NS is helping. If it's a successful abortive for you, it should be knocking out your HA within 10 minutes (at the longest).
If you do have true CH syndrome, you'll definitely need a higher dose of Verapamil. If you have to wait 2 weeks for a referral, you might want him to try increasing you to 240mg in a couple days. Just a thought ... Hopefully, the 02 will give you good results also.
Keep us informed and hang in there!
Kris
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don
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You definitely do not want to be taking 20 or 40Mg of prednisone per day on a continuous basis. Your GP is on the right track but not quite there.
I would insist on the neuro referal, O2 or not.
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| « Last Edit: Aug 18th, 2004, 1:54pm by don » |
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ex_pat_asia
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Re: Just diagnosed
« Reply #14 on: Aug 18th, 2004, 9:30pm » |
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With regard to the steriod taper. After finishing a taper, and assuming no relief as yet from the cycle, or the cycle worsens after finishing the taper...then when can another be started if at all? Anyone know?
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ex_pat_asia
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don
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Quote:| then when can another be started if at all? Anyone know? |
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Ask 6 differant Docs and you'll probably get 6 differant answers.
I tolerate the prednisone tapers well and have done 3 within a year with no noticable after effects. In the long run? Not sure.
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farmboy
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Re: Just diagnosed
« Reply #16 on: Aug 18th, 2004, 9:46pm » |
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Sorry to hear that you have had the need to look us up and join in on the party. Since you are here, read eveything that you can on this site and ask questions. There is always someone who can offer some advice or a place to look to get the right information you seek.
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