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chefjohn
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just diagnosed with CH
« on: May 7th, 2008, 7:36am » |
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Hello, my name is John and I am from New Haven CT. although I spend a lot of time close by in Milford CT. I finally broke down and went to the ER yesterday and have been diagnosed with CH. In some ways it is a relief to know what I have. I really can't recall how long I have had this because I never really paid much attention to the headaches and they weren't real severe over long periods of time but it has been years that I have been plagued in some way with these. This year has been a little different though and it started about 2 weeks ago. Severe pain on my right side which lasted for a few hours. I thought it was allergies being this time of year and started taking allergy medicine. It went away so I thought the medicine did its job. Finally I had my 5th one and this time the medicine didn't work. I did some research and discovered CH and took some of the quizzes on different sites including here and decided it was time to see a doctor. I went to the ER as I said and did not mention CH but rather just told the doctor my symptoms. He drew blood and did a CT scan and finally came back to me and told me he thinks it is CH. I kinda felt it was anyway but it was almost a relief (I know that may sound weird) to hear it from him independently. I responded well to oxygen well in the ER and I got prescriptions for imitrex inhaler and presdinone but haven't taken any yet. I was referred to a neurologist which I am going to go see and also want to confer with my brother-in-law who is a doctor. Not much else to say right now. One thing I may need help with is how to actually do all these tags and pictures, etc on these message boards because this is the first time I have ever posted a messaga on any board. Well I hope to hear from someone.
Sincerely, John
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debOUCH
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Re: just diagnosed with CH
« Reply #1 on: May 7th, 2008, 8:58am » |
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Hey John...............sorry 2 hear u r suffering! this is a great place to be @ a terrible time.................I am kinda new here, my first ever cycle began jan 30 and is still going........without this site and the awesome people i dont know what i would have done!............shortly, all of the experts will be here to guide you through this site ...to your left are all the links re: CH..........you did good by posting on this board...........hope u get some relief soon.............
deb
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chefjohn
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Re: just diagnosed with CH
« Reply #2 on: May 7th, 2008, 1:35pm » |
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Hey Deb
Thanks alot for your support. My first reply ever on a forum yeah!!! I just wanted to let anyone out there know that I went to pick up my first meds today. I was prescribed Prednisone and Imitrex. I do not have any insurance but the Prednisone is not that expensive however I got some sticker shock when they told me the price of the Imitrex (nasal spray). The pharmacy told me to contact GlaxoSmithKline who makes to see if I qualify for one of their programs and they said I qualify for their Bridges to Access program which should be able to offer me almost free perscriptions. It seems like a bit of a process appling for it but it will be well worth it. I'll let everyone know how it turns out.
thanks John
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Brew
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Re: just diagnosed with CH
« Reply #3 on: May 7th, 2008, 1:43pm » |
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Welcome, John. Glad you finally found out what it is, even though it sucks.
Click on the links to the left, especially the one called "oxygen info." Then read, read, read. You'll find that soon you'll know more about CH than you ever wanted to.
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seasonalboomer
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Re: just diagnosed with CH
« Reply #4 on: May 7th, 2008, 1:45pm » |
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Pred and Imitrex is a start. The Prednisone is kind of like a "bridge-loan" for you and may alleviate the CH hits until your Pred taper is completed. There is a chance they will come back if your cycle is continuing past that time.
Other/additional things to see if your dr. will consider:
- Preventative such as Verapamil -- a lot of times dr's will give the pred taper to interrupt the cycle while the verapamil builds up to effectiveness levels.
- O2 -- Imitrex can get expensive. I'd have to use about 5 times as much Imitrex as I use when in cycle if it weren't for Oxygen (12-15 lpm using a non-rebreather mask).
- If you're going to pay for Imitrex yourself you might as well have the "Really good stuff", and that is the injectable form. It's only not worked once, and every time it does work my CH is gone in less than 5 minutes (usually 3:45 on the nose).
Good luck!
Scott
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chefjohn
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Re: just diagnosed with CH
« Reply #5 on: May 7th, 2008, 2:21pm » |
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Thank you for the info. I feel like I am back in school with all the studying I have been doing. As soon as I get into a neurologist I will mention those other options. I was given O2 when I went to the ER and I am definately sold on it too. That is the first thing I want to ask the doctor when I see him. I will ask him about the other suggestions too. I'm off to the pharmacy to see what luck I can have there. Wish me luck.
JOHN
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Brew
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Re: just diagnosed with CH
« Reply #6 on: May 7th, 2008, 2:33pm » |
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Good luck!
Did you get the ER doc to write you some prescriptions? I ask because a trip to the pharmacy probably isn't going to do you much good without some slips of paper signed by a doc.
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DennisM1045
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Re: just diagnosed with CH
« Reply #7 on: May 7th, 2008, 3:34pm » |
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on May 7th, 2008, 7:36am, chefjohn wrote:| I responded well to oxygen well in the ER and I got prescriptions for imitrex inhaler and presdinone but haven't taken any yet. |
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You must have missed this Brew.
Welcome John,
As the saying goes, sorry you had to find us but I'm damn glad you did 
This place can be a bit like taking a sip off a firehose but don't let that scare you off. Odds are you'll have to wait a bit before getting to see a Neuro so you should have plenty of time to read up.
Self education is your best weapon. When you do get to see the Neuro you'll want to have some idea of the best forms of treatment.
You're already 1 up on most by knowing that O2 is effective for you.
Here are the best documents on current treatment. You'll want to study them and have them on hand for your Neuro visit. I hope you have one that is well up on CH. That'll make this a whole lot easier.
http://www.plainboard.com/ch/chtherapy.pdf
http://www.efns.org/files/guideline_49.pdf
-Dennis-
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Brew
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Re: just diagnosed with CH
« Reply #8 on: May 7th, 2008, 3:37pm » |
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on May 7th, 2008, 3:34pm, DennisM1045 wrote:| You must have missed this Brew. |
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Yes. Yes I did.
Sorry.
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Bob_Johnson
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Re: just diagnosed with CH
« Reply #9 on: May 7th, 2008, 5:06pm » |
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Bob Johnson
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chefjohn
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Re: just diagnosed with CH
« Reply #10 on: May 7th, 2008, 7:37pm » |
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Wow first day and so many responses already. I want to thank you guys for all the info. I have some more homework to do tonight although i hope i can get some sleep because I had my last bout monday night till 3 in the morning ad was up again at 8 on tuesday and haven't been back to sleep yet. I was feeling one coming on last night when I lied down so i got back up and did a lot of walking and it never became severe but i felt if I stayed down it would get severe. also I am trying to avoid afternoon naps. I have been sleeping on my right side for a long time now because i sleep on a couch and the episodes happen on the right side. i have switched to my left side last week but has anyone heard of any effect by doing this. just curious. gotta cook dinne be back later and thanks again everyone john
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barry_sword
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Re: just diagnosed with CH
« Reply #11 on: May 7th, 2008, 7:52pm » |
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Hi John and welcome to your new home. You are not alone with this anymore. Sorry you have to be here.
Read all you can to your left and then read more. 100% O2 at 15 LPM with a non-rebreather mask at the very sign of a hit coming on. This is my abort.
My last cycle was the first time for me using o2 but I was well into my cycle. I took prednisone to abort when I started a cycle and it worked great, but made me feel like crap.
I take Verapamil as a prevent at 480mg daily during my cycle. My last cycle I found a cocktail that worked for me, and hope you find something that works for you.
Nice to meet you.
Barry 
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Linda_Howell
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Re: just diagnosed with CH
« Reply #12 on: May 7th, 2008, 7:57pm » |
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Quote:| Wow first day and so many responses already. |
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John, John, John.....lol You only have posted 4 times so you don't realize that we are all family here. We try to help one another and you are now a new part of our family.
I don't think our Trigeminal nerve cares very much which side of your head you lie on.
Linda
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chefjohn
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Re: just diagnosed with CH
« Reply #13 on: May 7th, 2008, 8:49pm » |
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Like I said I am new to this and I must say it is a nice feeling not to be alone. At this moment I am taking my first Prednisone ever...welcome to the world of perscription drugs...well I guess I can't play in the NBA now. i just smoked the last cigarette in my pack too and I am getting a lot of pressure to quit them...that will be a little harder to do. i know that I had my last drink for a while. it seems to me that alcohol has been some sort of trigger for my bouts so far. monday i just had 2 glasses of wine and soon after an episode began. drinking will be easy to stop but smoking is gonna be a lot harder. wish me luck...john
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Jean
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Re: just diagnosed with CH
« Reply #14 on: May 8th, 2008, 9:59am » |
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Hi John,
I also try to sleep on the left side during a cycle. My pain is on the right as well. My head gets tender even in between the hits so I can't put any pressure on that side. I don't think that it makes a difference whether I get another hit or not though.
As far as alcohol goes..... During a cycle I can be sure that I'll get a kip 8-10 if I drink. Don't tempt it.
I'm new here too. I'm glad you are here but sorry you have to be. These guys have really helped me!
Jeannie
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George_J
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Re: just diagnosed with CH
« Reply #15 on: May 8th, 2008, 10:16am » |
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on May 7th, 2008, 7:57pm, Linda_Howell wrote:
I don't think our Trigeminal nerve cares very much which side of your head you lie on.
Linda |
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I don't think so either. I've tried sleeping on my CH side, and on the opposite side--but unless I prop myself in somehow, I end up where I end up--left, right, or flat on my back. Never seemed to make much difference.
Some folks have reported that sleeping with their head propped up, or semi-upright in a recliner seems to help. Never did much for me, but that's no reason not to give it a try.
Best wishes,
George
Edit to add:
As far as the alcohol goes, it's a very common trigger for episodics in cycle. I see that you've discovered that as well.
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| « Last Edit: May 8th, 2008, 10:19am by George_J » |
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Debonair.
(Ellen)
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DennisM1045
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Re: just diagnosed with CH
« Reply #16 on: May 8th, 2008, 1:10pm » |
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on May 8th, 2008, 10:16am, George_J wrote:
Some folks have reported that sleeping with their head propped up, or semi-upright in a recliner seems to help. Never did much for me, but that's no reason not to give it a try. |
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I'm one that gets relief from propping my head up. I added a 1" board under the headboard of my bed. You hardly notice the incline after the first night and I swear it helps me.
When the cycle really ramps up I end up on the couch propped up by pillows most nights. Even after the hit I just can't lay down again.
-Dennis-
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chefjohn
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Re: just diagnosed with CH
« Reply #17 on: May 8th, 2008, 2:19pm » |
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Well I got my first good night of sleep last nignt. woke up about 5 am but no pain and fell back to sleep for a few more hours. woke up with a slight shadow but nothing that really bothers me. I hoping that as long as I stay away from alcohol i'll be pretty safe but I'm sure there are some other triggers out there too. I just want to say I appreciate all the good advice everyone has been giving me. Thank you JOHN
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Jean
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Re: just diagnosed with CH
« Reply #18 on: May 8th, 2008, 2:35pm » |
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Hey John,
Glad to hear that you got some sleep! I hope that you continue on that route.
Jeannie
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Brew
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Re: just diagnosed with CH
« Reply #19 on: May 8th, 2008, 2:49pm » |
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on May 8th, 2008, 2:19pm, chefjohn wrote:| Well I got my first good night of sleep last nignt. woke up about 5 am but no pain and fell back to sleep for a few more hours. woke up with a slight shadow but nothing that really bothers me. I hoping that as long as I stay away from alcohol i'll be pretty safe but I'm sure there are some other triggers out there too. I just want to say I appreciate all the good advice everyone has been giving me. Thank you JOHN |
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Your good report is thanks enough.
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chefjohn
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Re: just diagnosed with CH
« Reply #20 on: May 9th, 2008, 1:03am » |
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Well I went back to work tonight at the restaurant and no real problems. I was afraid one was gonna hit me right during my shift. I could sort of feel one lurking right through the dinner rush but I have found so far that when I am busy working I am usually ok. It is when I sit down and relax that I start to worry one is coming....like now for instance. I get my Imetrex tomorrow so that will make me feel better just knowing I have somethive abortive close by. I go to the neurologist at the end of the month and then I should be able to get an O2 perscription. Would rather be safe than sorry. I can just tell if I had a beer right now my head would explode. I miss it but not that much. One thing I noticed today at work while my head was about K2 was that I had to go into the walk-in freezer at work which is about minus 10 degrees and I was starting to feel less pain. It has a strong fan on the compressor blowing super cold air and I went from a 95 to 100 degree enviorment to minus 10 degrees very quickly. I wonder if there is something to that. Just thought I'd let everyone know. Well for now I'm gonna try to get my second good night's sleep in a row. I can only hope. John
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DennisM1045
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Re: just diagnosed with CH
« Reply #21 on: May 9th, 2008, 12:11pm » |
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on May 9th, 2008, 1:03am, chefjohn wrote:| I have found so far that when I am busy working I am usually ok. It is when I sit down and relax that I start to worry one is coming....like now for instance. |
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Quote:| I had to go into the walk-in freezer at work which is about minus 10 degrees and I was starting to feel less pain. |
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These are classic CH! Stress works one way or another for a lot of us. For some it's a trigger. For others it's only when we relax that we get hit. Looks like stress keeps it at bay for you.
I use to stick my head in the freezer a lot before I got O2. It's the same effect, vasoconstriction. In the freezer it's your bodies response to the threat of hypothermia. I've a feeling you'll be spending a lot of time in the freezer 
Quote:| I get my Imetrex tomorrow so that will make me feel better just knowing I have somethive abortive close by. |
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Just be careful with Imitrex. Use it too much and it leads to rebound headaches.
I glad to see things are turning around for you. Finding out that alchol is a trigger is huge.
Wishing you many PFDAN!
-Dennis-
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