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sstrutt
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Just diagnosed lost with questions?
« on: Dec 12th, 2006, 4:48pm » |
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Hi there,
I am 26 years old and was very reciently diagnosed with cluster headaches but only after much research and several adverse reaction to doctor ordered medications on my part. It is hard to think back to when exactly they started but I would say sometime around last spring. I would be walking down the hall feeling just fine and out of no where my sinus (just 1) would start to burn and then it would feel like some one hauled off and punched me square in the right. That was alway followed by a hot poker type feeling. The worst of it would only last for awhile and there was little I could do to ease the pain. If I laid down I would just roll around in agony. I tried everything from packing my head in ice, to trying a tylenol, benadryl, caffine, meditation, pressure point coctail and nothing worked. I was frustrated and scared and I had a 1 year old son to take care of. My doctor thought that I was having migraines and I kept telling him that these felt deverent. He prescribed midrin? I think is what it was called. I was in the middle of an administrative meeting when all of the sudden all of my limbs went numb and I thought that I was going to pass out like I had had four beers to many. ( I'm a cheap date) Anyway I was rushed to the hospital were the determined that I had had an adverse reaction to the med and gave me a nice big shot of benadryl right in the rear. Which I felt for days. After that he sent me to the neurologist. He put me on Topamax (what a interesting ride that has been) I am only up to 50mg and we had tried imetrex injections but again I had had a severe reaction to it and had to quit. It felt like my brain was on fire and an elephant was sitting on my chest and about 15 min later I would have the chills. I guess what I am looking for is help and education. Between the Topamax and the CH I don't know how normal my life can be. As silly as it sounds I don't even know if I can take tylenol. I am getting married in April, am I going to be able to have toasts and drinks? I just don't know. I also do not know which type of CH sufferer I am. My headaches never seem to go away for months or even weeks, at best a couple of days. Help Help Help. 
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nani
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Re: Just diagnosed lost with questions?
« Reply #1 on: Dec 12th, 2006, 7:11pm » |
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Hi and welcome.
Look over on the left at the oxygen info link. It works very well for many of us if used properly.
You'll need to talk to your dr about another preventative, too, if the Topamax isn't helping much. Many of us use verapamil. Look here for a list of meds to discuss with the dr.
http://www.ouch-us.org/medications/medications.htm
Good luck and keep us posted. 
pain free wishes, nani
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E-Double
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Re: Just diagnosed lost with questions?
« Reply #2 on: Dec 12th, 2006, 7:15pm » |
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Here's my rookie schpiel
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2 005;action=display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05 now just awaken from a 6 month old haha).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start following my own advice again but then I might not wake up for the baby and wife will give me a real headache )
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
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chopmyheadoff
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Re: Just diagnosed lost with questions?
« Reply #3 on: Dec 13th, 2006, 7:51am » |
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hi there, sorry your in pain but your through to the right place !!
we are not doctors , simply suffers like yourself so please take any advice you are given as just that. advice.
always run your ideas past your doc first, ok ?
as for me, i am a chronic sufferer like you sound to be.
i have found that verapamil has given me near complete relief and i can live a near normal life again.
also, some take lithium. mention these to your gp, he may be reluctant to start you on verapamil because it is actually a heart med. you need a referal to a neurologist really
take care
chop
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GeorgiaPeach
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Re: Just diagnosed lost with questions?
« Reply #4 on: Dec 13th, 2006, 8:11am » |
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Welcome, but sorry you had to be here. As for toasting and drinks, alcohol is a CH trigger for most CH sufferers so if you are a drinker on a regular basis, try cutting it out and you might find some relief. As for the big day, well why would you want to risk a CH on your big day? I would replace the bubbly with sparkling grape juice. Talk to the wait staff, your guests don't even have to know.
Good luck, keep us posted
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Bob_Johnson
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Re: Just diagnosed lost with questions?
« Reply #5 on: Dec 13th, 2006, 8:44am » |
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 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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Bob Johnson
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sstrutt
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Re: Just diagnosed lost with questions?
« Reply #6 on: Dec 13th, 2006, 9:01am » |
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Wow,
Thanks everyone for the fast responses. I think that I am in a huge denial phase. I have been desprately trying to find something else, anything else that I may have. Unfurtunately, everything keeps leading me back to CH. So I am going to take a few minutes to throw myself on the floor and have a big pitty party, get it all out of my system, get up and deal with it I guess. Thanks for all of the advice. It does offer a lot of comfort knowing that I have people to talk too. This whole thing has also put a lot of strain on my family, so its tough all over. I am going to purchase the O2 today after work, I have hi hopes from what everyone has said. Well. I do need to get to work. Talk to you all later. Please Keep in touch.
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RichardN
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Re: Just diagnosed lost with questions?
« Reply #7 on: Dec 13th, 2006, 10:32am » |
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Hi sstrutt
Another vote for 02 here. I can't use triptans (Imitrex) due to some arterie blockage and high cholesterol . . . . so 02 is my only abortive . . . a real miracle for those of us it works for (60-70%). It takes a little practice . . . don't be dismayed if it doesn't work the first time . . . biggest key is to use it at the first sign of attack. PM me when you get your set-up and I'll walk you through.
Don't discount the "water X 3" (link to left) therapy. I'm absolutely convinced water therapy has helped me reduce the frequency/intensity of attacks . . . . it takes a LOT of water.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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boomer14
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Re: Just diagnosed lost with questions?
« Reply #8 on: Dec 18th, 2006, 8:46am » |
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sstrutt, I am new to this board, though unfortunately not new to CH's. I began getting them at age 17 and am 37 now. I wasn't accurately diagnosed until age 26 when I was a first year med student. After doing very well(and CH free)my first semester, my 2nd semester started with a bang(literally) and I began having 3-5 daily CH's. After starting the semester very poorly, the dean called me into his office and after seeing a wonderful neurologist at the Univ of Iowa, I was accurately diagnosed effectively treated. Currently, I am an ER physician.
IMHO, you are not being properly managed. I think that only a fellow CH sufferer can truly know what you are going through, and to not offer you home oxygen as an abortive agent is mismanagement. Oxygen works very well to abort my CHs and is a Godsend. If I was seeing you as a patient, this is what I would recommend:
1. Home oxygen
2. Burst and taper of prednisone(I would expect you to be CH free while on the burst and taper and may even break the cycle. What worked for me was an 80mg starting dose decreasing by 10mg every other day for a total of 16 days.
3.Start on verapamil
These 3 things should be done immediately IMHO. I feel Topamax(and all its potential side effects) should be tried if other methods fail. I know it can be difficult to find the right doctor and I wish I was seeing you in the ER.
As time has gone on, the prednisone has become much less effective for me and I am currently in the midst of a bad cycle. However, I still remember my days without oxygen nearby, and what a difference it has made. Today, I am increasing my Verapamil dose to 240mg 2x/day and plan to give magnesium supplementation as well as melatonin a try as this cycle has been going on for about 6mos and is quite frustrating. Let me know if I can help in any way. Boomer14
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sstrutt
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Re: Just diagnosed lost with questions?
« Reply #9 on: Dec 19th, 2006, 1:12pm » |
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Hey,
Thanks for the concern boomer14. Actually, I have finally gotten a couple of O2 tanks at home. They wouldn't give a mask though, just the canula. I am not sure how I feel about the topamx. I just had another dosage increase today. I have been having headaches around 12:30pm so we will see, they have been worse in the evening. I feel a little foggy and I am very tired of random parts of my anatomy falling asleep at any given moment. 
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CynthiaB
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Re: Just diagnosed lost with questions?
« Reply #10 on: Dec 19th, 2006, 2:26pm » |
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I also experienced a lot of side effects from Topamax. They stopped rather abruptly after one month. Now I don't have any problem with it at all. I was ready to stop taking it, the tingling was so bothersome. Give it a few weeks after each dosage increase.
As far as melatonin goes, I had a horrible experience taking it by itself. It may have been absolutely coincidental, as some nights/days are worse than others. I tried it again with benadryl and I have been able to sleep through the night. (2 nights in a row now ) I normally am awakened by the beast between 5am and 6am, so to wake up on my own starts the day off from an entirely new point of view.
Best of luck.....give the Topamax some time.
Keep us updated
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TonyG1
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Re: Just diagnosed lost with questions?
« Reply #11 on: Jan 5th, 2007, 8:10pm » |
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on Dec 19th, 2006, 2:26pm, CynthiaB wrote:| As far as melatonin goes, I had a horrible experience taking it by itself. |
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Generally, it doesn't help me either ...
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swimchica623
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Re: Just diagnosed lost with questions?
« Reply #12 on: Jan 5th, 2007, 9:14pm » |
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Hi there and another vote for the o2 and encouragement if it doesn't work the first few times...I would get so agitated during hits that the mask would slip off and it took me some time to get out of the state of denial when hits were starting so that I would actually use it at the veeery first sign, when it seemed to be most effective. It did take me some practice, but once it worked for me it became my new best friend and now I looove o2.
I take topamax because I have migraines as well as clusters. It seems to shorten the hits a little bit, maybe make them liiiiiitle less intense and so far I haven't had any migraines since I've been on it. But for clusters it doesn't do near the job that verapamil does, that seems to help a lot more...but I'm fairly new to this also. The combination of the two drugs, once they got going in my system, seems to be helping...I hope...don't want to jinx it.
Hang in there, I was a little freaked out when I was first dx too. Relieved, but freaked out because I thought I just had a weird sort of migraine. Glad you found us, we'll make it better. 
Lisa
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