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Topic: whoooa...lots of meds! (Read 397 times) |
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swimchica623
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whoooa...lots of meds!
« on: Nov 22nd, 2006, 6:35pm » |
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Hi everyone!
Wish I could have a cheerier post...I have just spent the last week in the hospital due to clusters. I was just diagnosed with them so this is all new to me, if anyone has read my other posts you know I'm a severe asthmatic so I've been hospitalized for asthma a lot, so strange to be there and able to breathe! I was a mess for most of the week though, I don't even remember the beginning of it because I was getting so many attacks and passed out from the pain and head banging sometimes. I have bruised completely covering both arms now. My mom came halfway through the week and didn't even see the worst of it and said it was like watching someone possessed. My dad was there for the worst part so at least I wasn't alone.
Anyway...medicines. After this week I have gone from 50mg of Topamax to 100mg and Verapamil (80mg morning and midday and 160 at night) and Indomethacin (25mg three times a day). I am still using Relpax as abortative because my body seems to just not respond very well to any form of imitrex.
When I was in the hospital they used a ton of stuff on me, I don't even remember half of it because I was so out of it most of the time. I was on a Depakote IV at first and then they did that one or two more times, they used toradil (?) during the attacks in my IV and during the bad ones some really strong narcotic at the beginning that started with a d, umm some steroid and a few other things. I was on DHE..I think thats what its called anyway? I also used oxygen for the first time and it did seemed to work, it didn't completely stop it but it made it so that I could lie relatively still and just kinda roll in a ball sobbing instead of going into Linda-Blair-mode.
Wow. sorrry this is getting so long. I was just wondering if anyone has had a similar experience like this, in the hospital or out of the hospital, what kind of side effects, if they felt really tired, how long did it take them to feel normal again, blah blah, blah. Also wondering if anyone knows anything we possibly missed in all this??
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Linda_Howell
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Re: whoooa...lots of meds!
« Reply #1 on: Nov 22nd, 2006, 7:26pm » |
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Good Grief Charlie Brown..like your title said......that is one hell of a lot of meds. Do you really and truly wonder why you are tired? Not to mention these HA's take a lot out of us.
The "D" word you referred to is probably Demerol. Nasty stuff.
When you tried the 02 you said it worked somewhat...a non-rebreather mask is a must....Clustermasx is better so you may want to try that.
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Guiseppi
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Re: whoooa...lots of meds!
« Reply #2 on: Nov 22nd, 2006, 8:59pm » |
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Ouch honey, a post to make a daddy cry. I'd rather suffer thru a kip 10 then watch either daughter go thru this. I'll just add one thing to Lindas post, the oxygen HAS TO BE USED CORRECTLY or it's a waste of your time. You need to breathe 100% Pure oxygen at the first sign of a hit. I use a modified demand regualtor, you need to ask for a Non Rebreather. If you fire it off at the first tingle you can abort a lot of the attacks.
Hoping and praying you get a break soon, you've got a doozy of a cycle from the sounds of it.
Much love and prayers, Guiseppi
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swimchica623
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Re: whoooa...lots of meds!
« Reply #3 on: Nov 23rd, 2006, 10:44am » |
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Thanks to both of you. As far as the oxygen goes, they did use 10-15L (it varied, but it was ususally 15) with a non rebreather mask. Buuuuut it may have not worked because I was thrashing so much that the mask did not stay on most of the time. I don't pace...I assume a sort of sleeping baby position and bang my head against the bed or side of the bed (they put padding so I wouldn't hurt myself too much) and the thrashing would make the mask fall off. I was in so much pain that no one could make me lie back to keep the non rebreather mask on. Does the cluster mask stay on tighter? Can it withstand the trashings of a rocker and headbanger?
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Linda_Howell
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Re: whoooa...lots of meds!
« Reply #4 on: Nov 23rd, 2006, 12:59pm » |
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A clustermasx fits tighter to the face, but you still need to hold it in place with one hand. Cut any cords on either mask off as soon as you get it.
While I understand what you're talking about with the thrashing around....02 works for me and so that is of the utmost importance to me while getting hit...keeping that mask to my face. Been known to breask knuckles on my other free hand though. 
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Re: whoooa...lots of meds!
« Reply #5 on: Nov 23rd, 2006, 8:09pm » |
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Did any of it prevent the attacks? DHE? Steroids?
Sorry for your pain
&
Welcome to the headbangers ball 
PF Wishes
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swimchica623
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Re: whoooa...lots of meds!
« Reply #6 on: Nov 23rd, 2006, 11:11pm » |
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I think the most successful things (well besides the narcotics too bad we cant take those all the time! those were sweeeeeeet) were the DHE and Verapamil. The oxygen might have worked if I could have been still enough to keep the mask on my face it seems. I don't think the steroids did that much, I was on them Wed-Sat although it seems that clusters are an asthma trigger for me so at least they stopped an asthma flare and they werent a total waste! And Imitrex does NOT work at all, as a nasal spray, shot, or pill. I think if I get a milder cluster I'll try it because the hospital accidently sent me home with it. But they put it in my left nostril and it was so stuffy and runny that it just came right out so I guess that was why it didnt work.
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Bob_Johnson
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Re: whoooa...lots of meds!
« Reply #7 on: Nov 24th, 2006, 8:12am » |
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I hope that your physicians have deep experience in treating complex headache problems. Just because a doc is a neurologist does not qualify him in this regard.
Can you tell us something about the doc's background/experience....
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Bob Johnson
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swimchica623
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Re: whoooa...lots of meds!
« Reply #8 on: Nov 24th, 2006, 11:36am » |
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Well from what I can tell he is very good. If I didn't seem to be responding to a medicine, he would stop it, if I seemed to be responding to one bu not enough (like Verapamil) he would increase it until everything worked. He listened to us which not enough doctors do. I had another neurologist that didn't at all...diagnosed me with classic migraines based on age/sex and ignored a lot of symptoms and just kinda ignored me in general. We don't see him anymore. I like this doctor and he helped me a bunch! What makes you think he didn't? (not to sound rude, just curious what it was in my post that made you think that way)
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Bob_Johnson
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Re: whoooa...lots of meds!
« Reply #9 on: Nov 24th, 2006, 2:14pm » |
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I'm posting this article only to make the point that many folks here, and elsewhere, have had problems obtaining good treatment. I was responding to the multiple changes in meds--just raised a warnin flag for me. But if you are pleased, then no problem.
----------------------
Headache. 2000 Oct;40(9):730-5.
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.
Klapper JA, Klapper A, Voss T.
Colorado Neurology and Headache Center, Denver 80218, USA.
OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.
PMID: 11091291
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Bob Johnson
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swimchica623
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Re: whoooa...lots of meds!
« Reply #10 on: Nov 24th, 2006, 8:02pm » |
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yeah...I do know exactly what you mean. The first neurologist I had misdiagnosed me as just having really bad migraines, what made them bad, who knew, he wasn't even concerned with finding the cause of that incorrect diagnosis....and usually migraines DO have causes. He put me on depakote without much thought to our concern to side effects and then switch to topamax because I literally couldn't stay awake on depakote (and later had sudden weight gain). When we switched he started with 25 but didn't set up a plan to increase. He ignored my cluster symptoms completely and just didn't understand the amount of pain I was in...granted he never saw an attack. I guess he just thought it was sinus problems and migraine.
So the new neurologist, which I saw partially from the frustrations with the one at home and partially because I needed someone closer to college where I spend more of my time, was sooo mcuh better. He LISTENED and said while I had some migraine symptoms (light/sound sensitivity sometimes and some nausea, but not to the extent that a lot of migraine sufferers explain) that I had a lot of cluster symptoms too and that is when he diagnosed me with cluster headaches. So I had been suffering undiagnosed for about 4 months I guess....not too bad.
I didn't mind him changing medicines around because he was taking away ones that didn't seem to have any effect that really SHOULD have had more immediate effect (like he left the DHE longer cuz that takes time) and persisted with others that were more promising. In the past, dealing with sticky asthma, I had had some doctors that had kept me on drugs that did not work as well as some others, and I think sometimes some playing around is good...the doctor is working around with you and figuring out what is best with you, especially cuz I am still very new at this!!
Thanks for your concern and for that article, I feel sooo sorry for anyone that has to go undiagnosed with these anyting longer than 4 months!!!! That seems unimaginable, I'm glad I got diagnosed when I did!
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