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Cluster Headache Help and Support >> Getting to Know Ya >> Never thought I would find a board like this! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1281804346 Message started by youknowit on Aug 14th, 2010 at 12:45pm |
Title: Never thought I would find a board like this! Post by youknowit on Aug 14th, 2010 at 12:45pm
For some reason I never thought to check for a forum as a way to connect with people that are experiencing CH's as well. Glad I found you guys!
Anyways, my name is Ryan and I am from Bangor, Maine. I am 28 years old and have been married for over year to my wonderful wife Stephanie. Currently a super-senior at the University of Maine at Orono (math and bio major) attempting to enroll in dental school for the fall of '11. I first suffered a cluster headache at the age of 24. It would come without warning and vanish anywhere from 30 mins to 2 hrs. Always just long enough to get checked-in at the ER where I would try to explain to the doctors what was going on, to then have it vanish. At the time I had never heard of CH and simply resorted to taking near-toxic levels of ibuprofen. My parents would watch hopelessly as I would scream, swear, cry hysterically, running in circles on the floor, all while wishing for death and asking the Lord "Why me?" As soon as the episode came it vanished for a number of years until this spring. Surprisingly, My family physician diagnosed me while having one in his office. He administered sub-q imitrex (also prescribed me maxalt) and administered 12 L O2. He also has given me a perscription for up to 15L of O2 which I havent attempted to submit to my insurance yet. Aside from seriously wishing death upon myself when I have a CH, the disease has caused a lot of collateral damage which I'm sure all of you are all to familiar with. It is a huge burden on a newly married wife to watch her husband go absolutely bezerk! In my worst CH attack I awoke one early morning to a searing, exponentialy worsening pain. I started to punch holes in the wall do to hellish pain and loss of sanity. Stephanie has been extremely supporting and loving but it depresses me to think that instead of acting like newly weds we have been living more like siblings due to the stress. As of late I have had some issues with getting the university to take my condition seriously. In the last summer session I was penalized because I missed a lab due to a CH. I requested an ADDITIONAL letter from my doctor to give to the dean to have my disability recognized. I have pasted in the letter explaining the situation.... Dear Dr.XXXXXX, This letter is in regards to my office visit on the 13th of July due to the cluster headaches I was having. I gave the note you had written addressing my circumstances to my professor later in the week. After taking my exam on the morning of the 14th I was unable to attend the afternoon lab due a CH. The TA (teacher’s assistant) explained to me at the time that my absenteeism from the lab in the afternoon would not be able to be made up because of tight scheduling. While checking my grades yesterday it was apparent that not only could the lab not be made-up but that it would be given 0 out of 25 grade points. If you could address, to me, another letter that states I was in your office that week (instead of the emergency room because of a $940 difference) to treat a previously diagnosed, on-going case of cluster headaches, requiring in-office administration of high-flow oxygen. I feel as though the university’s chemistry teacher’s assistants view my condition as a mere average headache. It was suggested during the week that it would be OK for me to bring my oxygen tank in to the organic chemistry lab even with the possibility of bunsen burners or sand baths being used. I feel the oxygen tank would have been a hazard in addition to myself being drowsy from the effects of the Maxalt while attempting to measure various strong chemicals. The next lab period the class was told it was cancelled due to the air conditioner not working which presented a safety issue. I fail to see the difference. I take my schooling very seriously. It is extremely disappointing to not be able to perform your best because of health issues. Due to my condition being chronic as of late it has hindered my ability to put the proper and consistent studying that I would normally perform. To miss one lab out of a total of 24 over 10 weeks due to a disease that is extremely painful yet taken very lightly by many is discouraging. I not only missed my lab but my scheduled interview with the University of Kentucky Dental School on 07/16/2010 due to my CH’s. At this juncture it appears as though I will have to put any future undergraduate and prospective graduate plans on hold until this condition can come under some sort of control. I completely agree with your expressed concerns over any future academic endeavors in lieu of the situation. I appreciate everyone who has listened to me ramble about this, but I am so worn out from the battle with CH and the problems it causes. I feel most people view them as a mere headache (best case) or the view you a complete fruit cake with a weak pain threshold. Even doctors which are knowledgeable about the condition cannot understand the pain which is experienced that can bring a young man with a bright future to his knees wishing for it all to end. I am feeling optimistic to find all of you which are experiencing what I am. I hope that I will be able share my experiences and lessons which might help someone else suffer a little less then I have. |
Title: Re: Never thought I would find a board like this! Post by Racer1_NC on Aug 14th, 2010 at 12:59pm
Welcome!
Best advice I can give is get that O2! You won't regret that move.... |
Title: Re: Never thought I would find a board like this! Post by Bob_Johnson on Aug 14th, 2010 at 1:39pm
What do you want from us by way of information, med literature, etc.
Do you have a headache specialist in your camp? Many people have wasted years trying to find relief because most docs have inadequate training/experience dealing with complex headache disorders. |
Title: Re: Never thought I would find a board like this! Post by youknowit on Aug 14th, 2010 at 2:06pm
Bob- I was more or less just introducing myself and my story, not really asking a question per say... if I stuck this in the wrong forum I apologize.
I could use some experiences/info if anyone has had to deal with school/work attendance issues. I was told by the Dean that if the professor did not want to excuse me that they did not have to legally. The dean could have the record removed from my transcript and give a refund but that was it. I cant see how that is even legal. I feel that is basically discrimination against a disability. My doctor is just a regular GP. He is very attentive to fine detail and I truly believe he cares about his patients. He was actually the one to breech the idea of CH's. He scheduled me for MRI, cat scan, etc... and then expressed that the next time I were to have an attack that he would rather I come directly into his office instead of paying a $1000 for 30 min of oxygen. If anyone in the central maine area is in need of a doc that is understanding of CHs his name is Dr. Fredrick Heinamenn. He is more than willing to refer me to a neurologist but the copays are starting to pile up and I feel my current doctor is trying to be as aggressive as possible about the situation. Until loan money comes in I cant afford it. Im going to attempt today to get my perscription for oxygen filled through my insurance ( Dirigo Health). Not expecting to have it covered but Im going to try. I will have to pay for it out of pocket if it is not covered. I feel oxygen works the best out of everything I am currently prescribed. Medications Verapamil 300 mg/day Ritalin 60 mg/day Maxalt (as needed, recently switched from inj imitrex) Melatonin (I take 10 mg every night) |
Title: Re: Never thought I would find a board like this! Post by Jimi on Aug 14th, 2010 at 2:37pm
Welcome to the board. It sounds like that your doctor is right on top of it.
Most of us can abort a cluster in 5-10 minutes using 02. Can you find a closet or private bathroom and leave a tank there so when you feel one coming on ,you can run in there and knock it out quick and go back to what you were doing? I kept a tank in my cruiser, one at the office and one in my private vehicle. I never let it keep me down. Good luck and read, read ,read. |
Title: Re: Never thought I would find a board like this! Post by Guiseppi on Aug 14th, 2010 at 9:58pm
Welcome to the board! 32 years of CH here, I've had the best success using a 2 pronged approach.
1: A good prevent. That is a med I take daily while in cycle to reduce the number and the intensity of my hits. I use lithium at 1200 mg a day, blocks 60-70% of my hits. Verapamil, at high doses, is the usual first try prevent, with Topomax also having a loyal following. 2 A good abortive. The attack starts now what? Get that oxygen prescription filled, but first read the 02 info link on the left. You must use a Non Re Breather Mask, start it at the first sign of an attack, and use a flow rate of at least 15 LPM. (Some go 25 LPM and higher to get relief, those regulators can be bought on E-Bay, Craigs List etc.) I can abort an attack, be completely pain free, in 6-10 minutes. Beats the hell outta the old 90-120 minute rides! PLEASE try the 02, it's been getting rave reviews around here! Imitrex injectables are great when I'm away from my 02, Imitrex nasal spray works for some, I have never tried them. Imitrex pills take too loong to be absorbed to be of much use to most CH'ers. Others have given you some great emergency tricks, the energy drinks etc., but PLEASE, get the oxygen filled. Like Jimi, I kept a tank in my cruiser when I was working, one in my office and several at home. It's freaking magic how fast it'll stop the pain. Welcome home. Joe |
Title: Re: Never thought I would find a board like this! Post by Brew on Aug 14th, 2010 at 10:26pm
Welcome. You've been given some great advice so far. You seem like an intelligent, sensitive and caring individual with a terrible affliction. That said,
Quote:
...you gotta knock that off, man. You're gonna scare the shit out of your new bride. Find some other way or you'll end up facing this thing alone. Many of us have found a way to become even more calm than we usually are by mentally isolating the pain in our mind's eye. Get the O2, and whatever other abortive you can use, and stay focused on being the master over your pain. And once you find an effective preventative (I'd talk to your doc about upping the verapamil or combining it with lithium), you'll find yourself winning these battles. Then, once it's under control, go visit clusterbusters.com |
Title: Re: Never thought I would find a board like this! Post by Lettucehead on Aug 15th, 2010 at 3:04am
Hi and welcome!
I know that many of us have had struggles in our work place in dealing with the absences that CH may force on us. I had to decrease my work hours after my second bout of CH in 6 months - the unpredictable time off was creating havoc with the office. That being said, yes, as far as my understanding, CH does fall under the law as a disability - ie. it has a significant negative impact in one or more of your realms of activities of living - work, social, home. It's worth a try talking to your dean or professor about this issue. If you receive no satisfaction, you may need to take it up the ladder... |
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