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plazticsoul
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2 months+ of craziness
« on: Jun 27th, 2004, 1:03pm » |
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Hi all,
I'm 23 and this is my first experience with what my Neuro seems to think is a cluster headache. I've put myself through a lot since January of this year and so it's been hard to determine the source of the problem.
First, I suffered a breakup with my ex-gf who cheated on me. I decided to quit smoking, start exercising, and study for computer certifications in my free time all as ways to distract and better myself. I have lived with ADD all my life but got off of medication over 4 years ago. Studying was nearly impossible so I had my GP look at my old medical records and that warranted a new prescription for Adderall, to help my concentration.
I remember going out one night to a club with a few friends who were on Spring Break from college and I had a few drinks, and I slipped up and gave into cigarettes. The very next week I started having a horrible pain behind and around one of my eyes. I HAD been studying an awful lot lately thanks to the Adderall so I figured it was just eye strain. Saw an optometrist who gave me reading glasses (which did NOTHING), after 2 weeks saw an opthalmologist who said my eyes were perfectly healthy and that it's just strain. I said fine. I took a break from studying but no relief came. Then someone suggested it might be Aspartame, since my ex-gf got me hooked on Diet Dr. Pepper which I was drinking about 5 cans per day. Waited it out and still no relief. Stopped taking Adderall. No relief. Quit smoking again. No relief. Saw my GP and he suspected a sinus infection. Had both a sinus CT and MRI which came back as 'acute sinusitis' but decongestants and antibiotics did nothing. Saw a 2nd opthalmologist who said "there's definitely something wrong with the pain you're describing about your eyes, but I see nothing". Sent me to a Retinal Specialist, who also saw nothing and finally sent me to a Neurologist. 2 hours in his office and he seems to think I am having a cluster headache.
What is odd is my pain is sometimes around BOTH eyes and it increases with movement, and there is only minor throbbing in the temple. It's more like it just hurts to move my eyes around. This to me does not sound like a cluster headache. Or is it?
The MRI showed no sign of a tumor. The Neuro is having me do blood tests, an MRA scan, some light-sensitivity test on the optic nerve, and some other test with electrodes on my head. THis is all scheduled for next week. In the meantime, he put me on a prednisone taper, verapimil, and Imitrex injections. I am only having 'some' relief on my 4th day and the prednisone dosage is now getting smaller.
It is true I want to climb the walls sometimes, but it's not because the intensity of pain. It's the frustration that this pain is being experienced 24/7 and I don't see it subsiding anytime soon. THAT is what's driving me crazy. Does this sound like a cluster headache, or no?? I am confused, but at least the doc is trying to have more tests done in the meantime.
Prior to April 2004 I have never experienced any eye discomfort or anything that 2 ibuprofen couldn't fix. This was not a gradual thing; it just came on suddenly.
The only things that I get significant relief doing:
1. Run 5 miles
2. Take hot showers
3. Splash cold water on my face
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plazticsoul
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Re: 2 months+ of craziness
« Reply #1 on: Jun 27th, 2004, 1:13pm » |
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Oh yeah, and eating food is a nice distraction, too. The spicier, the better. Then again... I'm from Louisiana 
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don
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Re: 2 months+ of craziness
« Reply #2 on: Jun 27th, 2004, 4:02pm » |
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Doesn't sound like CH,
Get a second opinion.
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plazticsoul
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Re: 2 months+ of craziness
« Reply #3 on: Jun 27th, 2004, 4:19pm » |
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I guess I'll wait and go through with the extra tests to see what they reveal. Hell, I've waited over 2 months. Guess I can wait 2 more weeks. My social life has DIED though because I feel so miserable, even going to the store.
I have had suicidal thoughts just because each day it seems more and more grim that this problem isn't gonna go away 
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plazticsoul
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Re: 2 months+ of craziness
« Reply #4 on: Jun 27th, 2004, 4:19pm » |
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Meanwhile, my vision is excellent.
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BobG
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Re: 2 months+ of craziness
« Reply #5 on: Jun 28th, 2004, 3:21am » |
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Welcome to the board. Glad to see that you are taking an active and positive role in finding relief. It sounds like you’ve been through what most cluster sufferers have before they get the correct diagnoses.
I am not a doctor and these are only my opinions.
I slipped up and gave into cigarettes.
I don’t think that smoking is a cause or trigger of clusters. Clusterheads seem to smoke more than the general population. Glad you quit again.
What is odd is my pain is sometimes around BOTH eyes and it increases with movement.
This does not sound like cluster headaches.
this pain is being experienced 24/7
This does not sound like clusters
but at least the doc is trying to have more tests done in the meantime.
Good for him and you. I don’t know what you may have but it doesn’t sound pleasant and it needs to be diagnosed and fixed.
I have had suicidal thoughts
That will not fix anything. It will only make your friends and family pissed. Hang in there. You and your doctor will find what the problem is and the pain will be gone soon.
On the left side of your screen is a ‘cluster quiz’ button. Click it and let us know the results.
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plazticsoul
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Re: 2 months+ of craziness
« Reply #6 on: Jun 28th, 2004, 6:55am » |
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The results seem to indicate that I "may" have them, but I want to be certain. I think it's scarier not knowing what I have  I took all of last week off from work and I have to go back today. Don't feel a bit better, except that the prednisone has removed much of the pain (there still is a level of discomfort).
Thanks for your help, guys, and any more input you're willing to give! The extra tests are this Friday and the follow-up visit with the neurologist is next Thursday when I'll be running out of the verapamil, and we should know something else by then
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| « Last Edit: Jun 28th, 2004, 6:58am by plazticsoul » |
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Superpain
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Re: 2 months+ of craziness
« Reply #7 on: Jun 28th, 2004, 3:05pm » |
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I agree that it doesn't sound like clusters.
Prednisone will relieve pain for a variety of ailments, so that's not really indicating much.
It sounds like something is definitely wrong, but believe me, you'd KNOW if it were cluster's.
The pain is not around both eyes, it's not 24/7, and it's so bad that you think you're going to die.
I'm no doc, but the symptoms you describe sound to me like an infection of some sort. I guess you'd probably be dead by now, but has menengitis been ruled out?
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Chris
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plazticsoul
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Re: 2 months+ of craziness
« Reply #8 on: Jun 28th, 2004, 10:20pm » |
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No but I'm sure the blood test I took last Thursday might have a clue. I dunno.. reading the symptoms and all, I'd say I have more in common with CH than mengengitis.... but that's not saying much 
I can only hope it's an infection at this point. But the sinus CT and MRI haven't shown much, and a round of antibiotics didn't clear anything up. I don't show much on the outside except for dark circles, tired-looking red eyes, and one eyelid that tends to droop at times. It just always looks like I never get enough sleep (but I do) and it hurts QUITE A BIT to move them around in extreme directions. I have high hopes for the light-sensitivity optic nerve test and a look at the neareby blood vessels. Otherwise, what the heck is going on with me?
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| « Last Edit: Jun 28th, 2004, 10:22pm by plazticsoul » |
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Superpain
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Re: 2 months+ of craziness
« Reply #9 on: Jun 28th, 2004, 10:36pm » |
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I had all those symptoms when I got mono when I was 17. It was caused by the Epstein Barr virus.
I ended up in the hospital and was so dehydrated they fed me 12 bags of fluid intaveniously in 24 hrs. That's like 3-4 gallons of fluid.
My eyes felt the same way.
Not to be patronizing, but try drinking shitloads of water.
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Chris
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plazticsoul
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Re: 2 months+ of craziness
« Reply #10 on: Jun 29th, 2004, 7:01am » |
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Thanks but I do that now and use the bathroom every 5 mins since I quit smoking.
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plazticsoul
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Re: 2 months+ of craziness
« Reply #11 on: Jul 23rd, 2004, 1:42pm » |
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Well it's been a while so I thought I'd post an update. Yes the test results all came back normal. 2nd visit to the neurologist (who is also a headache specialist) and I told him what YOU people were telling me and he said although some of my symptoms may seem uncharacteristic of CH, that it might still fall in that category (in other words, it would still be the best explanation). He wanted me to stay on Verapamil and started me on Topamax for a few weeks in the hopes of "breaking the cycle".
I'd like to clarify a few things from my original post. I HAVE noticed a few times per day where I felt like everything was "almost fine", and I've also noticed my pain being associated more around one eye more often than both (this one eye, when hurting the most, also sometimes appears protruded with a drooping eyelid. This is usually towards the end of the day). One night I woke up and my vision was all blurry in that one eye and I looked in the mirror and it was bloodshot. The PAIN itself is never severe enough for me to jump out a window, but the frustration sure is. It wakes me up several times each night, and has made me not want to interact at all with friends. They all think I've dropped off the face of the earth.
Anyhoo, blood tests reveal nada, orbital scans show nothing, MRI, MRA, CT, EEG, optic nerve tests.... zip, zilch!!
I've found myself missing a lot of work lately, which drove me to a pain treatment center this week. They stuck some swabs up my nose to block nerves or something which didn't do anything, gave me a prescription for valiums and Duragesic pain patch, in addition to the Verapamil and Topamax.... I feel fuzzy but still not comfortable.
My neurologist is prolly gonna have a fit when he hears I've put myself on additional stuff!! I see him a 3rd time on Tuesday  . He's supposed to be the best brain doc in town and after being to 3 opths and a retinal specialist, I'm at a loss for second opinions. Oh well.... his assistant is really hot so I don't mind going again, even though she does have me do all kinds of crazy things like touch my nose and count fingers and stick out my tongue.
If you people don't think I have CH, then I have a question for you.... if you could admit yourself to a place with the best experts in the world for a month, be charged a fortune you'd be paying back for the next 30 years..... but with a guarantee that you'll never have to suffer with the pain you're experiencing ever again, would you do it? Because I would. 
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| « Last Edit: Jul 23rd, 2004, 2:07pm by plazticsoul » |
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Wolf_Smiles
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Re: 2 months+ of craziness
« Reply #12 on: Jul 23rd, 2004, 4:23pm » |
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“I've found myself missing a lot of work lately”
There is a government backed act called F.M.L.A “Family medical Leave Act”
It is for people with chronic conditions as well as taking care of family members
With chronic conditions. If it wasn’t for that I would have surly lost my job years ago.
I’m not sure how it works in other companies or non union shops but they do have it. But there not going to offer it, you have to apply for it.
This is what I had to do.
1. Go to the office and ask for an F.M.L.A form
2. Go to your Dr.and have him fill it out.(look it over good to make sure every thing is answered , and is right or you’ll have to do it all over again)
3. Take it back to your employer.
This is only in the U.S
That will give you up to 12 weeks a year in single days or block (weeks at a time)
The form you get should say on it block or single make sure you get the right one you want. I don’t know how it works in non union places so be careful they can always find some reason to get rid of people.
I hope this helps with that problem. As far as the CH I really have no advice.
I’ve had them for 27 years and have found no relief. I keep telling my wife that a BJ
Might make it go away but she isn’t falling for it...LOL
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Prense
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Re: 2 months+ of craziness
« Reply #13 on: Jul 23rd, 2004, 4:31pm » |
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on Jul 23rd, 2004, 1:42pm, plazticsoul wrote:| My neurologist is prolly gonna have a fit when he hears I've put myself on additional stuff!! |
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Most likely...
Be careful not to screw up the relationship with your doc. It sounds like the neuro you are seeing is worthwhile, which doesn't seem to be common these days.
No one here can accurately say whether or not you have CH. Your best bet is to stick with your neuro's diagnosis or get a second opinion.
If you have been misdiagnosed, then you run the risk of not finding relief and possibly causing harm to yourself due to taking medications you do not need...not to mention the $$$ involved.
Relating pain or "feelings" is an imposible way to diagnose. We are all different and handle pain in many ways.
Regards!
Chris
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plazticsoul
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Re: 2 months+ of craziness
« Reply #14 on: Jul 23rd, 2004, 4:43pm » |
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Thanks. Actually I am state-employed so fortunately I don't have to fight much to obtain that luxury. I have been draining my hours of sick leave and once my vacation time is also gone, then I can take leave-without-pay if I get administrative approval.
Unfortunately as many have suggested, my manifestation is unusual of CH in some ways, so uncertainty is part of my worries. I need to use my time away from work carefully by also trying to rule out other conditions. I just don't know what other tests they can do to me at this point
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plazticsoul
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Re: 2 months+ of craziness
« Reply #15 on: Jul 24th, 2004, 6:48am » |
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on Jul 23rd, 2004, 4:31pm, Prense wrote:
Be careful not to screw up the relationship with your doc. It sounds like the neuro you are seeing is worthwhile, which doesn't seem to be common these days.
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Thanks, Chris. Yeah I definitely respect his opinion a lot more than some 'pain treatment' quack who is just like a chiropractor.... (not in business to fix anything). I just wanted to try something in the meantime because I couldn't get in touch with him. I tried that duragesic transdermal pain patch and it was just too much for my body to handle.... it made me feel dizzy and sick. The valium is nice, though May be just coincidence but Last night I was supposed to "amp" my dosage of Topamax up by 15mg, so I did.... and this morning I feel slightly better than usual. This was prescribed by the neurologist, by the way.
Oh yeah.. have another question, and this is just thrown out here not just for Chris. Are there people that Imitrex injections just not do diddly squat for? I tried that and unfortunately it didn't live up to my expectations. I am a pretty thin guy too so I don't think I would need a higher dosage.
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| « Last Edit: Jul 24th, 2004, 6:55am by plazticsoul » |
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Prense
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Re: 2 months+ of craziness
« Reply #16 on: Jul 24th, 2004, 5:28pm » |
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on Jul 24th, 2004, 6:48am, plazticsoul wrote:Oh yeah.. have another question, and this is just thrown out here not just for Chris. Are there people that Imitrex injections just not do diddly squat for? I tried that and unfortunately it didn't live up to my expectations. I am a pretty thin guy too so I don't think I would need a higher dosage.
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Some find that it is best to use the injection very early into the attack. If you have done that without results, then I hear Zomig is a nice alternative...
Chris
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| « Last Edit: Jul 24th, 2004, 5:28pm by Prense » |
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plazticsoul
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Re: 2 months+ of craziness
« Reply #17 on: Jul 27th, 2004, 7:11pm » |
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Back from Neuro Visit #3. The doctor, while still a little perplexed at some of the odd traits of my symptoms uncharacteristic of typical CH, is still certain of the diagnosis, and I believe him, after all the tests and after seeing that I do have some symptoms that definitely ARE characteristic.
I saw luck when my Topamax made the ramp up to 45mg last Friday, and the weekend was more tolerable, so he's putting me on a ramp up to 75mg (Before doing so, his lovely assistant asked me, "How have you been in the 'smarts' department?" and I laughed) . He's also increasing the Verapamil from 480mg to whatever scribble he's written down (I haven't filled it yet)
Probably the most curious new script he wrote me was home OXYGEN tank. Now, I know for sure that it works wonders on most of you people. Let's hope it does something for me.  (I do find myself wanting to breathe heavy when I'm in a lot of pain???)
My co-workers don't know who is the bigger nut..... me for complaining about an exploding eye or a doctor prescribing oxygen for it.
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| « Last Edit: Jul 27th, 2004, 7:20pm by plazticsoul » |
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BobG
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Re: 2 months+ of craziness
« Reply #18 on: Jul 28th, 2004, 1:55pm » |
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on Jul 27th, 2004, 7:11pm, plazticsoul wrote:
Probably the most curious new script he wrote me was home OXYGEN tank.
Let's hope it does something for me. (I do find myself wanting to breathe heavy when I'm in a lot of pain???)
My co-workers don't know who is the bigger nut..... me for complaining about an exploding eye or a doctor prescribing oxygen for it. |
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To a clusterhead a script for oxygen is not "curious". It is just normal. And oxygen tank in the house is just another appliance to use daily.
'wanting to breath heavy' That's your body telling you it needs more oxygen. Thus a prescription for an oxygen tank is the correct way to go.
Actually, your co-workers are nuts. A doctor that knows to prescribe oxygen for clusterheadaches is a good doctor. He did prescribe a non-rebreather mask, right? And a regulator that will go to 15lpm, right?
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ExPat_jac
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Re: 2 months+ of craziness
« Reply #19 on: Aug 3rd, 2004, 4:22am » |
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BobG....
Your sig line states.....
>> Stay stressed. Never relax. Never sleep. Ever.
You know buddy...while at times we may disagree....
I *live* your sig line.....it seems the only way to keep the beast at bay....to say SO far on the edge that even HE has to stop and hold onto his seat...giving me those much needed breaks!
Peace my friend
jac
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