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Cluster Headache Help and Support >> Cluster Headache Specific >> The Clusters have Returned :( http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1317658528 Message started by KGuite on Oct 3rd, 2011 at 12:15pm |
Title: The Clusters have Returned :( Post by KGuite on Oct 3rd, 2011 at 12:15pm
Hey everyone,
My name is Kelley and I am new to this site. I thought being able to discuss the hell of Cluster headaches with others who also experience them might be helpful. I suffered from Cluster headaches (diagnosed by my doctor officially 2 years ago) for about 6 months. I had a headache at least once a day for 4 of the 6 months, then they became sporadic and suddenly stopped. No one was ever able to figure out a trigger or cause for them. Now, after a year of being cluster free, they have returned. I have had a headache every day for the past 2 weeks. They have been increasing in severity and length. My husband has been supportive, but it is so hard to explain that one minute I am fine, but within 5 minutes I feel like my brain my explode out of my head. He is always asking what changed or if I did something differently. I don't think he understands that they just appear and there literally is nothing that I can do until it subsides. I take the generic brand of Fioricet to help, which takes the edge off, and try to force myself to relax enough for the headache to dissipate. It's quite hard to relax that much when your whole body wants to be thrashing about because it hurts so bad. Has anyone found anything more natural than pumping yourself full of heavy duty meds or eating Excedrin 3 times a day to beat the headaches? Someone had suggested pear juice, but that did not work for me. I can't explain how much I do not want to re-enter this hell. ~KGuite |
Title: Re: The Clusters have Returned :( Post by DennisM1045 on Oct 3rd, 2011 at 1:02pm
Hi K and welcome! You certainly will get a lot out of talking to other Clusterheads.
My first reaction after reading your post is to suggest you find another Dr. Foricet is not, in my experience anyway, a mainline CH drug. There are much more effective ways of fighting off attacks. I'll bet you are getting more benefit from the caffeine than anything else. Knock back an energy drink and see if it helps as much. I use Oxygen to abort but not much anymore since my preventative regime has been so effective. I use a combination of low dose Verapamil (120mg/day), Testosterone replacement therapy and a modified version of Batch's herbal remedy (check the medications section for that one). I would strongly suggest you look for a Dr with experience helping patients fight these things. It will make a world of difference in your ability to live your live. Spouses have a hard time watching us suffer and need just as much support. You should encourage him to join here and read along as you do. It will give you both a shared understanding of what is happening and how best to fight it. Empowerment is the word that best describes what I'm talking about. It changes your perspective from one of victim to that of a combatant. Everyone's road through this is different. We all find what works for us just a bit unique than what works for everyone else. That is what makes finding your own magic formula so difficult. It'll take some time but the results are well worth the search. -Dennis- |
Title: Re: The Clusters have Returned :( Post by Edgordon on Oct 3rd, 2011 at 1:38pm
HI. Kelley. I am also new to this sight. I can't even explain how much it is helping me get through this monster attack that I am going through right now. I have always used Prednisone in the past and it stopped working. I can't afford doctors right now but in the past I have been put through tons of test to find out that it is cluster headaches and there is no cure. The support here is AMAZING!! I also have been going through my attacks with no abortive or pain relieving help. IT HAS BEEN HORRIBLE. I keep hoping the cycle will end. When I go to the doctor I have always had to tell them what to prescribe me since they didn't seem to know anything about my condition. If I had been on this site earlier I would have been better prepared when I went last time. There is a ton of information here and a lot of people that want to help. I feel for you and know what you going through...GOOD LUCK...
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Title: Re: The Clusters have Returned :( Post by Guiseppi on Oct 3rd, 2011 at 11:28pm
Thanks Jon...must proof my posts better!!! ::)
Joe |
Title: Re: The Clusters have Returned :( Post by wimsey1 on Oct 4th, 2011 at 8:25am
Hey Kelley, and welcome. Please do read all of the advice you've been given, and take it to heart. You will find our collective wisdom has come through years of hard labor and much suffering, only to find there can be light at the end of this dreadful tunnel. One thing to add: stop chewing asprin. Like you, I resorted to this many, many years ago when I knew nothing about CHs except it HURT! Chewing asprin seemed to help abort the attack, but it also gave me an ulcer for which I needed treatment. O2 and imitrex are the best abortives. Oh yeah, energy drinks seem to help, too. Blessings and let us know what your plan of action is when you decide. lance
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Title: Re: The Clusters have Returned :( Post by katcha93 on Oct 4th, 2011 at 10:04am
I too am new to this site and am so thankful for all the helpful information. I had never heard of the energy drink thing and am anxious to try something new. I have a frustrated doctor that has suggested many times verapamil and steroids. I think I am just afraid of side effects or prolonging an attack with prednisone. I am sure there are answers to this throughout the site but to those who get episodic clusters...Do those come at the same time every year? Mine tend to be in October or December. That is only since I have lived in Massachusetts. When I lived in Boise Id, they came in March. Does anyone else see climate change as a determining factor? I also wonder about the nasal sprays. has anyone had any good results from capsacian nasal spray or perhaps botox injections?
Thanks so much! |
Title: Re: The Clusters have Returned :( Post by Guiseppi on Oct 4th, 2011 at 6:56pm
33 year episodic, in my 20's and 30's, I'd get 2 cycles a year, spring and fall, 8-12 weeks long. As I've gotten older they have become less predictable. Longer remissions, almost 2 years, longer cycles, last one was 8 months. My CH is not responsive to weather changes, many on this board have posted that barometrc changes aggravate their cycles.
The capsacian nasal sprays have not helped anyone that I know of. The imitrex nasal sprays are popular with many. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to ![]() ![]() Read this link. Oxygen should be your first line abortive. I kill my attacks in about 6-8 minutes just by breathing pure 02. Read the link as it must be used correctly to be effective. Joe |
Title: Re: The Clusters have Returned :( Post by B.Baer on Oct 4th, 2011 at 10:23pm
Welcome Kelley,
Great advise around here... +1 on the Oxygen mentioned by Guiseppi.... Fiorinal... Man Joe, me too, way to date yourself.... ;D... Thankfully those days are long gone my friend... Kelley, read... read... read... ask questions... repeat. All the best, Baer |
Title: Re: The Clusters have Returned :( Post by Guiseppi on Oct 4th, 2011 at 11:10pm
Fiorinal... Man Joe, me too, way to date yourself.... ... Thankfully those days are long gone my friend...
Sadly painful memories of firoinal, cafergot, and never ending pain....... :'( Joe |
Title: Re: The Clusters have Returned :( Post by B.Baer on Oct 4th, 2011 at 11:42pm
Joe,
We've come a long way my friend.... We took that cocktail (drank the Kool-Aid as it were) with a smile on our face , expectations in our hearts... and an ongoing Pain in our heads..... ;) Over and over and over again.... Should have took stock in the stuff. :D They, were doin' the best they could do under the circumstance, and with limited experience but high expectations... Seems such a long time ago.... Kelley, we digress.... as you can see, some of the members have been around awhile... understatement, and have suffered due to the limited knowledge available within the medical communuity, this forum HAS helped to change all that. Glad you found us..... Great group of folks around here. Relax and sit a spell. Baer |
Title: Re: The Clusters have Returned :( Post by wimsey1 on Oct 5th, 2011 at 8:10am
Welcome, katcha93, from another MA denizen. I haven't noticed any change since moving here from FL. I tend to do very badly in hot weather and better in cold weather. We have a lot of resources here, which doc are you seeing? As to side effects of meds that have proven helpful...well, there are side effects to everything, including doing nothing and letting the pain drive you into a very dark hole. Still, O2 is the best abortive and relatively safe. Imitrex (spray or injectable) is very fast and using the tip at the left can be reduced to much more cost efficient and effective 2mg doses. Lots here to read and note. Let us know more about yourself and what you've tried. Blessings. lance
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Title: Re: The Clusters have Returned :( Post by bhb on Oct 5th, 2011 at 10:42am
Hi Kelley - I'm also fairly new to this site but not to CH, 35 years with any number of Drs and no relief until visiting here.
O2 is a God send and Batch's 123 pain free I've been doing for about 4 weeks now and I'm completely pain free. I noticed just after 1 week a reduction in both pain level and number of hits per day as time went on it just kept getting better and better. I can't say enough about it except that I really wish I'd found this site years ago. Really hope you can get some relief soon |
Title: Re: The Clusters have Returned :( Post by KGuite on Oct 11th, 2011 at 6:12pm
To everyone who responded...thank you so much! I have been trying to keep myself busy hoping that the less time I spend sitting around the less I may get a headache. Wishfull thinking, right? I apologize I did not list my location. I live in Maine and have my entire life. =)
Today makes 3 weeks of having at least one headache every day. The past 4 days have shown an increase of 2-3 or more per day. Lovely. I have an appointment to see my DO on Thursday and hopefully discuss a few things with him. If none of this works, there is a neurology center which focuses on migraine/headache relief that I will be contacting if I don't get anywhere with my regular doc. We will see...with these things only time will tell...and patience is certainly a virtue! Thank you so much again...your support is already making this easier...and now I have lots to read up on by Thursday so I can bring in some new ideas to the doc! ~Kelley |
Title: Re: The Clusters have Returned :( Post by debbi.T on Oct 31st, 2011 at 9:35am
hey kelly. i was diagnosed in april but didnt have any meds as my cycle lasted just 6 weeks. I got a lot of useful information from this site especially as i didnt want to put loads of different drugs into my body. I drank red bull when i felt a shadow and within 10 mins the shadow had gone. I also drank a glass of water every 30 mins and , altho i was going to the toilet a lot, my attacks were less frequent and shorter. the pain intesity was not as bad either. I hope you have found something that helps you deal with your pain.
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Title: Re: The Clusters have Returned :( Post by CaroleA on Nov 2nd, 2011 at 6:55am
Welcome Kelly, I am new to this board too and have found a wealth of information and support. I have just started taking verapamil (on my 3rd week now) at 240mg/day and for the most part they have improved. Have gone from every night for hours, to just a twinge and 2 pain free nights in a row. I have also started taking (1 week now) 9mg of melatonin 1/2 an hour before going to bed and a big glass of water. Not wanting to try the energy drinks (side effects), I keep a large double espresso capuccino in the fridge and start to drink that at the first sign of a twinge. This combination has been very effective and in 5 days the twinge has only progressed to a full-blown CH once!
Good luck and keep us posted. Carole |
Title: Re: The Clusters have Returned :( Post by BreMac on Nov 2nd, 2011 at 10:15am
Welcome Kelley, sry to hear the Beast found u again but glad u found us. Just wanted to say hello and to "Read, read, read there is a wealth of info here all of it is good its just a matter of finding out what works for u. Good luck and keep in touch :)
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