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jenright80
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exploding eye
« on: Mar 11th, 2007, 11:43pm » |
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Hi i'm new here but, like so many others, am desperate and could use any advice anyone has to offer. I am a 26 year old female and was previously, before this started, a veterinary technician, frequently exposed to parasites and other veterinary hazards. I also got the rabies vaccine march the first year after my headaches became weekly. About four years ago, I began to get headaches more frequently than I used to. I have gotten migraines since I was about 8 so i was used to headaches, even bad ones about 2-5 times per YEAR. These new headaches (they are distincly different from migraines!!!) came about 3-4 times per week and started everyday at 2 o'clock. They weren't too bad, just irritating. Eventually (around summertime) they became everyday, but worsening at night. One day in July, I went to work as normal but I suddenly felt confused, disoriented, and couldn't do math, or comprehend what people were saying to me. I went home early and returned to work two days later, though still feeling this. Exactly two weeks later, I went to the ER at about 1030 at night. I walked in and told them my eyes are going to explode. They tried to treat me with common migraine meds but it had no effect. They gave me something else, some kind of narcotic and it went down to a 5. I was released early that morning only to have to go back the next night. This was worse!!! I have never and hope i will never feel pain like this again. It distinctly sttarts as a headache then goes into, i cannot emphasize this enough, INTO my eyes, one more than the other but both eyes. photophobia and nausea accompany this, and several times with the severest ones i have vomitted. anyway the hospital this time could do nothing for this headache. no amount of narcotic or anything could touch it. i thought i was gonna die. i didn't know how long i had been there when i came out of it, i thought it was over night. they told me i had been there for 3 days and screamed the whole time. they discharged me 2 days later. All bloodwork, mri, ct, lumbar punc. all norm. lyme neg, hiv neg, ana neg, thyroid- neg, several times.
What confuses me is this. it does not meet the criteria for migraine or cluster, but the closest thing i see to the feeling is cluster. it IS accompanied by tearing, stuffy nose, and it comes back every summer since then. Is it possible that I have two things going on and maybe i have cluster h/a's and it's confusing the doctors? I read somewhere that cluster h/a's may be brought on by brain waves attributed to REM sleep. Well, the one thing that was abnormal was my eeg(several done showing the same thing). "bilateral paroxysmal slowing". it was descibed to me as no big deal but my brain is acting like everyone else's does when they're asleep. no seizure activity though. so maybe that's why the h/a's last so long? cause my brain is in this sleeping phase all the time?
My last trip to that er was at the end of that summer. i went in again with the complaint my eyeballs are going to explode. screaming again. When i finally got treatment- compazine for nausea, i think. they weren't going to give me anything for pain. the doctor came over to me and told me to be quiet, there were other people in the hospital who didn't want to hear me and if i didn't stop screaming he would "call a psychiatrist and have me committed."
what could i do? my screaming turned into a sob and i spent the rest of the summer without a last resort. i could go to no one. Someone i worked with later told me they probably thought i wasa drug seeker becaue my bp wasn't that high and i was at the time 22. my neuro had put me on amytriptaline, isn't that an anti depressant? anyway, each summer it has come back, though none as bad as the first. interestingly enough, the first summer it was moreso the right eye, the next summer the left, and last summer the left. I have tried in no order the triptans(imitrex, frova, etc.)- nothing but they do give me chest pains. percocet, ok if i take it right away, no response after severe pain starts. fioricet- nothing, fioricet with codeine- ok if i take it right away, but you can't take narctics everyday so how am i supposed to deal with that if i get it everyday? depakote- they thought that's what took the h/a's away the first summer. amazingly they came back the next summer regardless. topimax. this wonder drug did nothing for me. again the h/a's come back in the summer. many many more. can't list them all. please feel free to ask questions, as this has already gotten too long.i feel bad for all of you who have suffered from this terrible eye pain, i wish the doctors could feel it and know so they could make it better.
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| « Last Edit: Mar 12th, 2007, 6:33am by jenright80 » |
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jenright80
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Re: exploding eye
« Reply #1 on: Mar 12th, 2007, 6:34am » |
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Also with these headaches i feel hot and am very sensitive to heat, i usually end up on the bathroom floor which is cool linoleum. Also, though i prefer to lay down in a dark room, i also manage to get a rythym going so i can bash my head against the headboard. if that doesn't work, i get up and look for smething to eat and smash my head against the cabinets. it works really well, all you have to do is stand there and your arm moves the cabinet door. this, of course is when they aren't too bad and incapacitating yet. i also want to mention that i get a lump on the back of my neck/base of my skull which i have always felt the pain was coming from. my dr's ("of course you feel relief from a h/a when you massage your neck" ) have brushed this off, but i know it's connected because when i push on it really really hard, not a massage, just strong pressure, the pain is notably relieved. definately connected.
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| « Last Edit: Mar 12th, 2007, 6:37am by jenright80 » |
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Bob_Johnson
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Re: exploding eye
« Reply #2 on: Mar 12th, 2007, 12:08pm » |
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You don't mention whether you are seeing a good headache doc. If you are not, find one.
1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org/physicians/ On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
---------------
If you are not getting relief from Imitrex, I wonder if you are using the injection form (best) and injecting at the first sign of an attack. Delay until the attack is well developed will negate its impact.
=======Explore these sites:
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
======================================================================== =
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)
http://www.brightok.net/~mnjday/chtherapy.pdf
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jenright80
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Re: exploding eye
« Reply #3 on: Mar 12th, 2007, 3:12pm » |
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I have seen many neuros including dr silberstein, (the great white hype) at jefferson. I did not like him. Everytime i made the hour drive out there, he would increase or decrease my doseage of depakote. At first he ordered tests, but when i went in he never had the results. He said they were somewhere else. they don't keep them at the hospital. Also I had to go over my story with him everytime and that would take up all the time. He saw me at my near worst, a week after the terrible attack I described earlier. I was pale and sickly looking, the headache was continuous, but not bad, and I seemed to have a head tremor, (chorea?), I was numb to the world and slightly confused, just slow. so I'm thinking if it is possible that my daytime headache was what you guys call the shadow. My very first dr, (primary) thought it was clusters, after that everyone has said migrainous, transformed migraine and complicated migraine. I am definately unhappy with the care i have recieved from all but a handful of physicians and I have ditched the neuros i was seeing and stick to my new primary care, who i love.
Incidentally, i saw an epilepsy spec/ neuro and he put be back on topamax. when i questioned him about the safety of the drug because of the side effects, he said of course it's safe. then he added that he gives lectures on it for the company. I stopped taking it anyway because i saw no effect on the condition once the summer came back. I have been everywhere there is to go. I have been researching this on the internet for 4 years. There are no corresponding diseases for my symptoms. I'll have to research the processes which cause clusters and maybe it will end up having some other effect on the rest of the stuff. I forgot to mention this was just the worst episode. Most of the time it is a weak headache all day, (usually summer), then progressing to really bad at night. Oh and i have a question about the meds like imitrex. If you're not supposed to take them every day, but you're supposed to take them at the onset, how do you know which days to take them when you know every day is going to be bad?
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LeLimey
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Re: exploding eye
« Reply #4 on: Mar 12th, 2007, 3:39pm » |
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Hello Jen,
there has recently been a topic about neuros in the Philly area and one has been highly recommended -
Michael Martin Cohen
Headache and Neurological Center of Philadelphia
Suite 620 GSB Building
City Line and Belmont Aves
Bala Cynwyd, Pa. 19001
610-664-3888
I do believe you would get an accurate diagnosis and effective treatment from seeing this chap and from what you have said it made me wince - sure sounds like CH to me but with over 600 headache types getting an accurate diagnosis is essential. Many symptoms overlap and scarily drugs that work for one HA type can literally kill if given for another.
I hope this helps a bit, it sounds like you've been floundering (through no fault of your own I hasten to add!) forfar too long and you need some proper help and fast.
In the meantime have you tried any of the homehelp remedies we have found so useful here such as ice or heat, strong coffee or red bull (cheap equivalents work every bit as well) at the first sign of an attack (caffeine is a vaso constrictor so can be very effective in constricting the expansion of the blood vessels which is what causes the excruciating pain)
I'm sorry I can't be of more help right now but I can promise you we will support you every step of the way and help by trying to answer any questions we can.. you just ask away okay?!
Take care, I hope you get some pain free time soon
Helen
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Rosybabe
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Re: exploding eye
« Reply #5 on: Mar 12th, 2007, 5:23pm » |
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Hi Jen!
I am sorry to hear you are having the bad ones. Some Doctors think that because we are women we make up and escalate our pain, little they know what we go through....
I have been there too..
have you tried Cafergot?? works for me if I take it right away..
maybe O2 at the right concentration and with the right mask ...
you may have a combination of clusters and migraines..
I do get migraines the rest of the year when I am not in cycle..
at the beginning I used to have 2 or 3 cycles at year, they seem to last forever...
Good thing you found this place, I wish I had found it earlier, the guys here are a great help, not only with information but also with support and understanding.
Wishing you lots of PF days!!
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jenright80
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Re: exploding eye
« Reply #6 on: Mar 12th, 2007, 6:55pm » |
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k i just typed a really long response to this and my computer erased it and what's worse it was a human error-me. i wanted to say that i live on caffeine and yes i stopped it one time to see if that's what was causing it. the caffeine thing is interesting though in that i stopped taking an ephedrine/ caffeine pill right before the headaches started, after taking it on and off for about a year. "yellow jackets and "stacker two's" i told my dr's too but they brushed it off. it seems that most drs don't want to be the one to say yes they could be related, then again i live in a 'sue-happy' state- NJ. i wanted to thank you for the help, and i thank you for being there for me. at least now after four years i feel like i have someone who understands the ~PAIN~. thank you. i will look into the neuro though i am pessimistic and untrusting of the medical field now, i am willing to try anything to get the correct diagnosis so i will save my money for it. a couple of questions though. do you need a script for O2 and cafergot or is it OTC? I will try the red bull thing though i never really liked th stuff, i will try anything. i think you could probably tell me to stand on my head and spin in circles and i would try it.  thanks again
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Rosybabe
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Re: exploding eye
« Reply #7 on: Mar 12th, 2007, 7:07pm » |
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yeap!
Everything in this beautiful country is under the control of the Medical Industry, you require prescription for O2 and Cafergot, and everything else...
But Red Bull is available to everyone!! 
Hang in there Jen!!
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| « Last Edit: Mar 12th, 2007, 7:07pm by Rosybabe » |
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LeLimey
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Re: exploding eye
« Reply #8 on: Mar 12th, 2007, 7:13pm » |
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You do need a prescription for cafergot and also for O2. If your doctor won't help with the O2 (although there is no reason why he shouldn't) come back - there are always options!
This resource may be useful to you to print and show him or get him to look at himself
http://www.chhelp.org/mhni.html
Also there are several links at OUCH US which you may like to read through (OUCH is the Organisation for the Understanding of Cluster Headaches) It's free to join and it helps strengthen our "voice" in the medical world so please consider it! The links page is here http://www.ouch-us.org/chinfo1.htm
Like you I HATE the taste of red bull (some people like it but I think they're just plain twisted! ) I do love the way it aborts a hit for me though - the trick is to chug it as fast as you can as soon as you can. The longer you let a hit ramp up the harder it is to shift.
We truly do understand what you are going through here, we'll do all we can to help you 
Helen
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jenright80
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Good News!!!!
« Reply #9 on: Mar 12th, 2007, 8:11pm » |
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I went to wawa because i was starting to get a headache. the wawa is 3 minutes away from my house but i didn't know if i would make it. i went to get caffeine drinks at the suggest of people on this board. I got a coffee and a dreaded red bull. i figured if it would help i'd drink it. i pounded the 16 oz coffee and finished it by the time i got home. i opened the red bull at hme and took a sip. i almost threw it up. apparently red bull does not go well with nausea. i threw it out. s'ok though because it's now a half hour after i first felt the headache coming and it's [u][/u]gone!!! omg i love you guys!!!! i'm gonna go do something cool!!!
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LeLimey
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Re: exploding eye
« Reply #10 on: Mar 12th, 2007, 8:23pm » |
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Jen you've just put a huge huge smile on my face - I'm so pleased for you!
Red Bull is hideous but keeping it ice cold helps also if you find the fizzyness hard to drink fast you can open it and leave it in the fridge to go flat - it doesn't make it taste better but it works just the same!
If you have any more cans keep one in your bag and literally try it at first twinge before it gets any chance to ramp up. Sounds like that ole coffee did the trick for you though (and I do love my coffee!!)
There is nothing like the feeling when you win a round is there?!
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jenright80
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Re: exploding eye
« Reply #11 on: Mar 12th, 2007, 8:45pm » |
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beating or relieving a headache feels better than any narcotic drug anywhere. drs don't understand that i think. the "high" is not from the drugs that relieve. the high is the relief itself. the coffee tonight proves that. and i went to get it as soon as it started coming. they do come on fast. i've never felt better though. i really am gonna go do something cool now, to celebrate.
big smile!!!!
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Rosybabe
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Re: exploding eye
« Reply #12 on: Mar 12th, 2007, 10:40pm » |
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Good for you Jen!!
I also heard that Mountain Dew works too, it does not taste bad like Red Bull..
Do you have a Starbucks close to you?
a double expresso can work wonders!!
Hope you get a lot more days like today!!
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TonyG1
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Timing is everything..... at the first twinge a hit is coming the caffeine is hit hard and heavy, then on to the other defenses (abortives)
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