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Title: my history/some questions Post by ak on May 23rd, 2007, 5:02am Hi everyone...I have an appointment with a neurologist in a few weeks but I wanted to see if anyone on the board has had a similar experience to mine and could share any insight...thanks! I'm not sure if these are clusters or not, hopefully my new neuro will know. The pain itself is a strong, yet dull heavy pressure point that feels like it's behind my right eye, trying to push through or pull in, I can never tell. Sometimes I feel my face and torso sweat during a heavy attack. Sometimes I can lie down, other times I pace and curse the living f**k out of everything and everyone. :-[ I feel like the pain is "revolving" sometimes...like I feel it BAD in the front, and it slowly revolves so that 15 seconds later I feel a little less pain...and then slowly 15 seconds later WHOA it's back in front again... My headaches last 45 minutes to an hour, with my longest ever probably being "only" 90 minutes thankfully (I know that many of yours are longer and/or more frequent and you have my deepest, deepest, sympathy). I can't really describe them well and for that I apologize...but these are BAD I think...I am a big strong guy at 6'2" 180 lbs I can take pain pretty well and can handle charging 15 foot surf but these headaches, they reduce me to a quivering, thrashing, unintelligible baby practically these days... Sometimes ice helps, sometimes not...sometimes massaging between my eyebrows or near my right eye helps, sometimes not...no over the counter pills have ever helped, I haven't tried caffeine as abortive very much but when I did it didn't seem very successful...the water trick didn't work as well for me either... I started getting headaches when I was sixteen, in high school. I noticed that they always came at about the same time, every day, usually around 9-10 am when I was in class. The pain was quite intense for me and just barely beneath my "threshold," so I never left class or anything, I just suffered through it and tried to close my eyes or breathe or rub my temples etc. I was otherwise healthy and so I went to doctors/neurologists and got cat scans and mri's and everything, nothing was found and they gave me things like imitrex and zomig to try, which didn't seem to work but my headaches seemed to stop after a while so I forgot about them. But of course after a while they came back. I never got them in summer, when I was out surfing and everything. My parents and I thought I could be allergic to something in school. The pattern of morning headaches continued until I graduated (although I did go through months of remission periodically...just enough to make me "forget" the pain and be more half ass about seeking treatment...not very wise, I know, but I was only a kid :-/). College was a new, fresh start for me and I was so excited to get out of that school and leave my headaches behind. Unfortunately, as I dreaded, they followed me and seemed to only be steadily increasing in severity. I'm with a hmo (the bad kind) so if I want to see a specialist doctor I need referrals and tests and followups etc...the process can take two-three months before even seeing a specialist like a neuro. For me I had completely lost faith in the system and looked into more alternative measures like nutrition, acupuncture, chiropractors, etc. |
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Title: Re: my history/some questions Post by ak on May 23rd, 2007, 5:03am My mom's nutritionist (who is very highly regarded, especially by the cedar sinai medical center) told me after looking at my blood work and diet that I was hypoglycemic and needed protein in the morning and to avoid carbohydrates. I was skeptical but I tried it. It seemed to work - I bought sugar free everything, threw out all breads, ate lots of protein and vegetables, did the whole thing and it did seem to improve my headaches. But then they came back. They came back last spring/summer. I felt like I had been headache free for a year. I still was keeping to my diet, exercising (I had lost weight and felt great), doing my thing but man was I frustrated. The whole time I had never known what a cluster headache was. I thought I had migranes, tension headaches, stress headaches, sinus headaches, anything. I looked up the symptoms...hmmm...sharp pain behind eye on one side of head...DING DING DING...can occur daily for long periods and/or have long remission periods...DING DING DING...does not respond to excedrin or advil or tylenol...DING DING DING I look back on this history and think "why have I not been better at seeking treatment over the last seven years..." Well unfortunately when I am not in the middle of a zonker I literally almost forget what the pain is like and that I even get these headaches, even though they could potentially happen every day. I don't take anything for the pain but some vicodin I got my hands on, which sometimes seems to help a little, but for me it's hard to tell. I tend to take adderall daily but it doesn't seem to affect them at all. I am so bummed out from all this sh*t, peoples. I'm glad I found this place. I have some general questions (I'm assuming these are clusters, if you think they aren't or have any questions/comments on my history or anything PLEASE feel free to ask): Has anyone ever obtained some relief from marijuana? What about percocet? Does anyone have info about diet/nutrition or things to avoid? Like dairy, gluten, etc. Has anyone found some relief from accupuncture? Any general comments on what they recommend over at clusterbusters? Any other drugs one might recommend or avoid? Anti-depressants, amphetamines, valiums, etc.? Any herbs that are helpful? I know there's a plethora of info if I just google all this but I've been doing that for a while now and want to get some opinions from the people on the front lines. Thanks for reading, sorry it's so long... adam (ps. I will be a grad student in psychology next year going for my PhD...one of my fields of study will be improving the lives of children with autism, and I want to also do massive longitudinal studies of cluster sufferers...because I'm never going to give up hope that there can be a cure for all of us, and if I have to be one of those that helps find it then so fucking be it...these headaches WILL get beat, one way or another...) |
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Title: Re: my history/some questions Post by seasonalboomer on May 23rd, 2007, 6:57am on 05/23/07 at 05:03:21, ak wrote:
Adam, Welcome to the site. I'm going to guess that research is not your strong point as a graduate student. Take some time to poke around the site and you will get answers. A couple of easy ones include using Oxygen to abort cluster headaches or Injectable Imitrex. Those two tools alone can be lifechanging. Add a decent preventative and you will see a big difference in how you are able to lead your life during a cluster cycle. Scott |
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Title: Re: my history/some questions Post by ak on May 23rd, 2007, 6:18pm thanks scott well, actually I've had two papers published since I was an undergrad and presented them at conferences at ucla but... ;) I'm just kidding - I have looked around the site and just about every single other one I could google but I want to just get some opinions from those on the front lines. Like a page might not have, say, a reference to seaweed as a possible supplement but someone might come along and recommend it. right now vicodin is a little effective but I'm very nervous of needles and imitrex in general, and I want to see the neuro before I do that or o2. Now I'm just looking for things to avoid or modify slightly. oh and I've started verapamil the calcium channel blocker, it should open blood vessels I think which could be helpful. thanks for answering my questions, it is very helpful |
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Title: Re: my history/some questions Post by BlueMeanie on May 23rd, 2007, 6:52pm Hi Adam, You symtoms sound like Cluster Headaches to me. Sorry to hear you're in the same shell as the rest of us nuts. I recommend checking out the oxygen info. Works very good for a high percent of the people here. Also check into getting Imitrex injections. Pills and sprays don't work fast enough. Ditch all the drugs you mention, doesn't do squat for Clusters. Some swear that diet will help. For me, it doesn't matter. The only for sure trigger we ALL agree on is alcohol. Avoid at all cost during your cycle. if you get long cycles, check into prevent meds. I've always prefered to tough it out tell its' over, but my cycles normally only go for 8 weeks. Hope they end soon and don't come back, or at least for a few years break. Welcome and hang in there. They will end eventually. |
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Title: Re: my history/some questions Post by Ray on May 23rd, 2007, 6:53pm oh and I've started verapamil the calcium channel blocker, it should open blood vessels I think which could be helpful. Perhaps a minor correction, but calcium channel blockers tend to make your blood vessels less reactive and prevent the over dilation, not "open" them up. It will take some time to be effective, if it will work for you; hang in there. Wishing you PF days and nights, Ray |
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Title: Re: my history/some questions Post by Redd on May 23rd, 2007, 7:00pm on 05/23/07 at 18:18:00, ak wrote:
Unfortunately this is incorrect. Verapamil helps to prevent the over dialation of the blood vessels,because during a CH attack, those same vessles swell up to 20X the normal size. Imitrex/needles? That's a walk in the park in comparison to to kip 6 or better. If you are looking for a natural avenue to help with this beast, there is the Kudzu threads on the Medications board. Very informative. another natural route to investigate is www.clusterbusters.com good luck |
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Title: Re: my history/some questions Post by Paul98 on May 23rd, 2007, 7:15pm Adam- If you get a script for imitrex I would reccomend getting the single dose vials and some 0.5ml insulin syringes for delivery. You have very good control of dosage and the needles are hardly felt because the gage is so small. With the autoinject (STAT pen) it is a PITA to take them apart to get multiple doses. You do not need the full 6mg of imitrex to abort an attack. Good luck. -P. |
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Title: Re: my history/some questions Post by E-Double on May 23rd, 2007, 9:12pm Hiya Adam, There are some great folks in the field of Behavior Analysis in Cali. who do tons of research and treatment with individuals with Autism. The Koegels stand out for me @ UCSB. I'm a BCBA in NY and have worked in the field ( teaching, direct treatment, research, training and lecturing)for way over a decade. As far as clusters go..........Learn as much as you can! Read Read Read and know more than the docs for it is them in many a case that have to be educated. I had these through out undergrad, grad and post graduate work and continue to have them pretty much daily for the past 3+ yrs. I manage to live a functional life and have learned what I need to survive. Stay positive, educated and do the best you can. Cheers to you and kick a$$ BTW where will you be doing your doctorate? E |
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Title: Re: my history/some questions Post by MR_FLOOR on May 23rd, 2007, 9:41pm Personally I think any narcotics are triggers they have never helped me and as for pot I was a chronic dope smoker til about 7 months ago (had to grow up)I quit I wish cigs were that easy.But I think they were a trigger for me as well can't be sure cause I smoked 3 to 4 times a day and only some of the times I would get CHs. [smiley=twocents.gif] Dave |
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