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Topic: My Treatment (Different Strokes / Different Folks) (Read 534 times) |
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Hai
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My Treatment (Different Strokes / Different Folks)
« on: Oct 29th, 2003, 6:01pm » |
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Otay!
After last nights (Las Vegas) Meeting. I promised one of the members I would post my med treatment given to me by my doctor. I first want to give a little history and hype (that’s well deserved for the guy).
At age 16 I started getting these terrible headaches. My mother was very pro-active in getting her kids into the doc right away whenever we started having any sign of sickness or pain. For about 3 years I went through what most CH people do - Sinus doc's, Ear, Nose and Throat specialists. The headaches would come in episodes that lasted about 3-4 months and then come back the next year around the same time (end of summer, start of fall).
One night at the age of 19 (I believe) in the emergency room a lady doctor walked in (while I was in the middle of the attack) and said to me "You poor guy, you suffer from cluster headaches". She then went into detail on what they were and gave me the bad news on how there was not much that could be done about them. I was prescribed Caffergot, and sent to a local Neuro who continued that treatment along with O2 (up the nose tubes that did not work for jack). In 1992, I had a really bad CH, that sent me to the emergency room. I went in here flipping out so much that security had to restrain me. He took pity on me (being a fellow sufferer himself) and got me in the back ASAP. The nurse came in the room, had me lay down, and gave me an injection. I asked "Is this the usual Demerol?", and his response was "No, its something new". I got the shot, he turned off the lights and left the room. Within 5 minutes the headaches was POOF gone! About 2 minutes after that 3 doctors came in and all stood around me mumbling to each other about how great this treatment was. I was released, but they would not give me the drug in prescription forum. My Cycle was pretty much gone a few weeks later anyhow and the caffergot got me through the rest.
I moved to Las Vegas following that, and when my season came around for Clusters - BLAM -! They hit me hard as hell, and I mean ....this was the mean one of all episodes. I went two weeks rolling around on my living room floor, screaming, punching holes in my walls etc. I had no insurance and did not know what to do. Finally after not sleeping for 3 days my wife looked on the internet and found 1 doctor reccomended under the headache foundation named Dr. Karl Fazekas who practiced at a place called "The Headache Clinic for Paradise Valley" (and was not a Neuro). She called and explained my situation (and no insurance), and was told to bring me in within the hour.
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Hai
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Re: My Treatment (Different Strokes / Different Fo
« Reply #1 on: Oct 29th, 2003, 6:02pm » |
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I arrived at a small hole in the wall office. The doctor there spoke with a very HEAVY accent. He did a a very through exam - verbal and physical. He then sat there for 20 minutes typing something in this laptop of his as I sat there twiddling my thumbs. FINALLY he turned to me and said "Are you ready to make the clusters go away?" ........my response was "What sort of stupid question is that! HELL YES!". He prescribed me a very high dossage of Prednisone, which he explained would ease my pain but not really break the cycle. Then he gave me a prescription for 3 drugs called Verapamil, Klonopin, and Doxepin. He stated that the Doxepin was the key. What you did with it was at night time ( 2 hours before planned bedtime) take 1 Klonopin (which made you relax/sleepy), and then take the doxepin which you taper up from 25 mg each day till you max out at 150 mg per night. He also gave me 2 shots of Imitrex to keep handy, and his cell phone number in case of emergency (he would meet at clinic and treat me even more), but said within a few days the Imitrex or any CH abort meds would no longer be needed. Last but not least, he charged me 20 dollars for the appointment, and remember I had no insurance.
WELL ....
He was right. The first 2 night I had mild headaches, more like shadow clusters as they explain here on this site. Then it went to no headaches at all, ZERO, NODA ..BYE BYE. The next month I saw him he stopped my treatment and said I would probably not need them anymore till my next cycle came back. I was hesitant to stop the meds but I did, and he was right (finally ...miller time!).
The following years (1994) the headaches came back. I immediately called up the doc. He was not seeing patients according to his office (he was a hospice/pain doctor also I believe who attended to people who were suffering in the hospitals, and had his hands full).
I and the wifey had insurance at the time so I did some homework on the local Neurologists in the Valley, and made appointments. The first one I saw was a joke, he simply admitted he knew nothing about Clusters enough to treat me, but did give me a bottle of verapamil till I did find a doctor. I then found a doctor through my insurance that had high standing for treating migraine/clusters named Margaret Goodman, she had a rep also cause she was the doc for all the boxers (yes Mikey Tyson also) who came in town to fight. Well when I saw her she did not seem very aggressive on the Cluster treatment, before she would even start helping me with the pain she wanted to run tests... WHAT THE FUCK! TESTS! ..NO DOC I WANT A FIX NOW! Oh well I went along with her tests, but since this was under my wifeys insurance I did a covert move under my insurance and went to see another neuro named Gerald Dunn, and his diagnosis was I had sinus issues ...OMG now we are back to Sinus issues..What the hell. Okay, so as you can see Neurologists can be in the dark about Cluster headaches just as much as your regular Internal Medicine doc. What finally worked for me was I convinced the lady doctor (after 2 visits of her shaking her head NO) to prescribe me Doxepin, along with
Verapamil. She did that and gave me some imitrex pills (that maybe curved off 5 minutes of the end of my attacks).
Guess what ?
Within 2 weeks of the Doxepin treatment *BING* clusters gone. She still did not buy it on my final visit that was why the clusters stopped, she said my cycle was probably at its end...and maybe it was who knows
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Hai
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Re: My Treatment (Different Strokes / Different Fo
« Reply #2 on: Oct 29th, 2003, 6:03pm » |
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After that I went many years without any CH's, until 2 months ago this year of 2003. The headaches started coming back in a mild manner. Basically waking me up from my sleep, and I could plug my nose and push the pressure in my head out my ears for about 10-15 mins and go back to sleep. Then as they progressed I would purposely trigger them while awake by drinking beer, get the CH (still mild/medium) and pop 3 motrin or Aleve. It was better to handle the onset of a CH awake then being woke by one. I thought I had the fuckers licked...yet 3 weeks ago while doing my Alcohol trigger ...I got the BIG KAHUNA!!!! It was not pretty. Needless to say since then every night they remained as severe. Into the 3rd night I went to the emergency room where the doc gave me a 5 day supply of prednisone, 6 pack of Imitrex Nasal spray (which aborted my CH in like 15-20 mins), and Loratabs for the sore/tenderness afterwards. I was told to see my regular doc right away. Well I posted the days to follow in another thread titled "My Journal - Pls Read", so I won’t bore you more than you already are. Lets just say my regular doc dodged me like the plague, and I ended up back in emergency waiting 12 hours just to get a freaking prescription of Imitrex again.
The next day my wife happened to drive by my old doctors place and saw it had a new sign on it related to plastic surgery or something like that. She went inside out of curiosity to find out what ever happened to Dr. Fazekas. The doctor inside there told her he still practiced inside the Building in an office in the back. My wife got his number and immediately called me with it.
If you only knew how excited I was to hear he was still around. I dialed the number expecting an answering machine and got that familiar accent.....with the word "Long time no hear Larry". If I could only tell you the relief I felt hearing his voice again. He was in California (at a seminar on migraine headaches) and told me he would be back in town in 2 days, and to call him if I needed anything in between.
A few days later I saw him, he did those long physical, and discussion diagnosis examinations on me then the 20 minute laptop typing (some things never change). Then came the words I was ready to hear "Okay, lets get you better". Here is what he prescribed.
Diltiazem - 120mg 2 times a day (He said this is far better than verapamil treatment).
Topamax - 25MG Taper UP effect (if you want details I will be glad to post) This not only helps with clusters but you lose weight on it also, one of his patients in the waiting room had lost 40 pounds within the last month on it.
Klonopin - 2 MG 2 times a Day (the 2nd dose is taken with the Doxepin below)
Doxepin - 25 MG Taper Up Effect, take 2 hours before bedtime with 1 Klonopin. Trust me, if you try to fight staying awake you will end up having a conversation with yourself in an empty room.
Soma - Just to Ease the soreness from prior clusters, and relax my muscles in the neck and head.
1) The first night I had what I would call a mild cluster. very short, plugged my nose for five-ten minutes and back to sleep. No Imitrex needed
2) The second night slept all night
3) The third night no headache, slept.
4) Last night, same as above.
And there you have it! I aksed my doctor if he treats everyone the same way he treated me, and his response was NO, my treatment was the 1st step, if it did not work....he goes to a more aggressive method, wonder what that is ....hmmmm.
For anyone who has read through this message and/or is interested in seeing this doctor (he also travels all over the U.S. to seminars, you might be able to catch em passing through your town in fact for an appt!). Here is his information :
Karl C. Fazekas, M.D., Ltd
3163 South Eastern Ave.
Las Vegas, Nevada 89109-3308
(702) 732-2277
The phone number you see there is a cell, you will 9 out of 10 times get him answering it, if not leave a msg and he calls back pretty dang fast.
That’s it!
Larry
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Prense
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Re: My Treatment (Different Strokes / Different Fo
« Reply #3 on: Oct 29th, 2003, 10:02pm » |
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on Oct 29th, 2003, 6:03pm, Hai wrote:Topamax - 25MG Taper UP effect (if you want details I will be glad to post) This not only helps with clusters but you lose weight on it also, one of his patients in the waiting room had lost 40 pounds within the last month on it.
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After three days of this, I could barely stay awake...
I don't know ALL the side-effects would have eventually passed or not as I was not able to stay on it for more than 15 days. By far, the worst 15 days of my life. After stopping that med, it took nearly a month for all the side-effects to go away. I was tapered up incorrectly (the side effects began before dosing up), but I tapered down correctly.
Hope you don't live the nightmare I did.
Chris
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Hai
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Re: My Treatment (Different Strokes / Different Fo
« Reply #4 on: Oct 30th, 2003, 2:15am » |
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Hi Chris,
You mentioned sleep being a side effect. I have had tons of energy. However, everyone has different reactions to drugs (like I mentioned in the topic - Different strokes / Different Folks). What were the other side effects you had? How was your dosage started? Here is my breakdown -
25 MG -
1 TABLET x 2 DAYS
2 TABLET x 4 DAYS
3 TABLET x 1 WEEK
4 TABLET x 1 WEEK
then back to the doctor.
Sorry to hear about your bad expierience. I just met a lady at the pharmacy tonight who lived on Imitrex, and now stirctly takes Topomax for her Clusters. She mentioned that it can make your hands and feet tingle sometimes, but a banana can fix that (potasium).
Larry
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Hai
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Re: My Treatment (Different Strokes / Different Fo
« Reply #5 on: Oct 30th, 2003, 2:21am » |
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Oh one more thing to add for those at the Vegas meeting. I talked to Jon Fleegle today. The only drug that ever worked for him was Sansert, due to him being a chronic cluster sufferer. Well we all know Sansert is off the market now. His doc tried him on a Blood pressure med called Covera, after trying all kinds of crazy drugs that did nothing , and since then he has had zero pain.
Just wanted to pass that on ....
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Prense
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Re: My Treatment (Different Strokes / Different Fo
« Reply #6 on: Oct 30th, 2003, 7:25pm » |
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Covera is verapamil...different brand of the same med.
I know I was dosed up incorrectly on Topamax...hence that fool was fired. However, for entertaining purposes...I started out at 50mg per day. By day 12 I was at 300mg.
Here were the side effects (I am sure I wont recall them all):
- Speaking of recalling...short term memory loss
- Jolts shooting through my arm into my hand (similar to the feeling of racking your funny bone against a chair)
- Almost non-stop tingling in my feet/hands (tingling similar to when your hands/feet are "waking up"
- Taste changes (I could have lived with this minor nuisance)
- Inability to remain awake! 13 hours was the max awake time I was ever able to achieve.
-Slurred speech (almost completely impossible to understand-like being drunk)
- Dizziness
I know people react to meds differently...I only brought it up because you were early on into the med. I was at 50mg, day three when the side effects hit.
Hope it works for you!
Chris
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forgetfulnot
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Re: My Treatment (Different Strokes / Different Fo
« Reply #7 on: Oct 30th, 2003, 7:27pm » |
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It is very interesting that you bring up doxepin, I am beginning to understand that my father was a clusterhead B-4 anyone had ever heard of it, he took this drug for over thirty years. The last twenty years of his life he never complained of headaches, he always took his doxepin. I thought it was a tranquilizer.
There may be more to this drug than we think, I just started it and I anticipate it will be of some benefit.
Geese, such a simple old drug may be the key for some, ought to have my butt kicked, let ya know after a while if I have any success.
Lee 
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| « Last Edit: Oct 30th, 2003, 10:58pm by forgetful » |
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Hai
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Re: My Treatment (Different Strokes / Different Fo
« Reply #8 on: Oct 31st, 2003, 3:22am » |
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Yeah, keep me posted on the Doxepin treatment. Is the dosage amount simular to mine, more or less ...equal? Sometimes it takes up to 2 weeks to kick in, sometimes 2 days. Let me know, I have always been interested in this dealio.
Thanks,
Larry
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LasVegas
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Re: My Treatment (Different Strokes / Different Fo
« Reply #9 on: Oct 31st, 2003, 10:56am » |
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Larry,
Good thread you posted here, really informative. The lady at the pharmacy was a cluster sufferer? Did you get her # or let her know of this website or our group?
Prense, Regarding the side effects mentioned in your post, was that from Topomax?
Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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HypnoticFreddy
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Re: My Treatment (Different Strokes / Different Fo
« Reply #10 on: Oct 31st, 2003, 11:07am » |
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From what I have read, Doxepin is a tricyclic antidepressant. I was once given a similar drug; Amitryptiline for my CH's. Did not work for me.
-HypnoticFreddy
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Prense
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Re: My Treatment (Different Strokes / Different Fo
« Reply #11 on: Oct 31st, 2003, 1:26pm » |
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on Oct 31st, 2003, 10:56am, LasVegas wrote: Prense, Regarding the side effects mentioned in your post, was that from Topomax?
Gregg in Las Vegas |
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Yep
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