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Topic: Getting too intense..need advice(sorry its long) (Read 816 times) |
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joe_w
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Getting too intense..need advice(sorry its long)
« on: Jul 26th, 2003, 11:18am » |
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Ok..first I am going to start off with "I am sorry for the long post", and that I expect to get a little flaming for a couple reasons..#1 I didnt do a search, because I want opinions more than answers..#2 my# of posts show me as a newbie, as I guess I am ..again. I was registered on the old forum,(Im in th locator ..Joe in Green Springs Ohio) but havent visited the site in quite some time, as I have been P/F for so long that it is scary..but its back with a vengance.My old name wont work, as my computer has crashed(a couple times) and any password I use dont work, and I have since changed my e-mail addy, so I cant get it sent to me any more. Enough rambling...here is the story..
I have had CHA for approx 20 years..I am now 42 married with 4 daughters. About 4 years ago, they just quit coming around..a couple of P/F years went by and then I started another cycle..but much shorter and less severe than the past..Figured a new Dr. and different drugs (Verapimil, and Maxalt MLT)then another 1 1/2yrsP/F..1st week of May (this year), that familiar feeling in the middle of the night woke me up.Started right away with the Verap and Maxalt...10 weeks later, it is now so intense, that I really dont know how much more I can take...guess it wasnt the drugs working before..just lucky I guess..
I guess what I want to know is, is it worth it this late in the cycle to try a differant Dr ( a real one this time..not a family Dr, but a Nero..)On one of my last visits here, It was recommended to me by one of the regulars on here(I am bad with names) that I see a Neuroligist at the Cleveland Clinic(Im in Ohio..1 hr from Cleveland near Cedar Point)But of course that cycle ended, and figured I would wait till the next one before I made an appoinment.Then I musta been in paradise, as I was almost P/F for 4 years.
Of course if it wasnt a money issue also, I would be there already, but as I said..4 daughters ..1 just graduated college (of course I am still paying for it)..1 is getting married next year, and the other 2 are still in H.S...cheerleaders..gymnastics..1just got drivers lisc. ect..I do have insurance (pretty good too) but it still seems to cost $100.00 every time i see a Dr.
Between the drugs..HA and lack of sleep, I have no patients..I dont need to tell any of you about that..Last night while my wife went to pick up daughter #4 I had our 4 yr old granddaughter with me when one hit..I scared her,(because of the pain I was in) and that really pi**es me off..I tried not to let it show...but as you know.......
So..do I just weather it out, because its gotta end sometime (and soon I hope), or can this go on awhile yet(cycles used to last 6-8 weeks) and would I be wise to make an appointment with a Neuroligist ASAP?..Are any of you familiar with Cleveland Clinic and any of the Dr.s on staff..any recommendations??There is also a H/A clinic in S MIchigan that I believe is somewhat close..would that be a better option?
Again..sorry about the rambling and length..I guess more than anything I just need to vent, and I can hit these keys pretty hard and do minimal damage..lol.
If nothing else..thnx for the place to vent..If things are as they used to be on here..this is THE best place for support that I have ever found..thnx
Joe
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Kirk
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Re: Getting too intense..need advice(sorry its lon
« Reply #1 on: Jul 26th, 2003, 11:33am » |
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I have been blessed with a GP and a Neuro who both understand the prob.
I would see a Neuro ASAP
Sorry to see ya back
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catlind
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Re: Getting too intense..need advice(sorry its lon
« Reply #2 on: Jul 26th, 2003, 11:49am » |
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Sorry to see you back Joe_w. A competent neuro is a definite asset. I would try to get in and see one right away. I've only heard good things about the cleveland clinic.
Sadly, yes it can go on for a long time. There are alot of meds out there that are available to us CHers now. Have you used O2? Or imitrex injections? Verapamil is a first line drug for CH, but if it isn't helping you may want to ask the doc about adding lithium or trying something new.
I hope you find some help, and welcome back to the folds of the family.
You're right, this IS the best place for support.
Grab an oar and start rowing!
Cat
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realtornorm
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Re: Getting too intense..need advice(sorry its lon
« Reply #3 on: Jul 26th, 2003, 12:00pm » |
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Hey Joe, hang in there man, they will go away. I went to a nero once and he didn't seem to know anything more then I did about these things, this is what I do-- I research on this and other sites for my self, then I go to my doctor, and I tell him what to give me and he always does. It's kinda funny actully, this guy will write me a script for anything I say. Just My Opinion, I feel for ya man--be strong
I take Verelan PM twice a day 200mg morning and night, I also take one imitrex 50mg before bed everynight, then I use imitrex injections once in a while most of the time I just try to ride it out, showers help me sometimes just to try and kill time.
GOOD LUCK
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Bob_Johnson
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Re: Getting too intense..need advice(sorry its lon
« Reply #4 on: Jul 26th, 2003, 1:33pm » |
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Joe, you have been around ch.com long enough to know that meds work and then stop being effective; that there is significant variety in which meds, or combinations, work for different people.
This being the case, changing docs doesn't make sense--as long as you feel confidence in the one you have AND he is willing to try different meds to find something effective for you.
My style is to get one or more of the better books on headache so that I have some ideas to present to my doc and as a way of having some external confirmation that what is being tried in reasonably main stream. I'd recommend one of these:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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joe_w
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Re: Getting too intense..need advice(sorry its lon
« Reply #5 on: Jul 26th, 2003, 2:55pm » |
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Your right Bob..I reilize that some meds work and some dont..as my list of ones that dont just got longer by 2..lol...I guess I didnt ramble on enough..My GP that perscribed the Verap and Maxalt has moved to another state, so I am left with his replacement. The old GP had treated 1 case of CH before mine, and though no expert by any means, was very open to suggestions. In fact, I told him of this site, and it was on the next visit that he prescribed the current meds., telling me it was a starting point and that he got alot of usefull info from here.Fast forward to the present Dr....all I wanted was a refill of the current presrciption, and it was like pulling teeth..He wanted to start all over with tests etc to make sure that it was properly diagnosed the first time...(I have had 5 different Drs...they move away, retire or die on me..3 cat scans, and 2 MRI's)I am not a Dr, but I can assure him...I have CH!! I did get him to reluctantly refill the scipt, but since I really dont know him, and didnt get the impression that he really knew what CH was or even heard of them for that matter, I figure I will be looking for a new Dr., and was wondering if a neuro should be the way to go, or just find another GP with hopes that he is receptive to suggestions from me based on info from here and other sources that I have read?
I will tell you the truth..I know I should go more often, but usually I "weather" these things out..just getting tired of the hassles of the whole Drs office thing...untill they get like this...the point where I really dont know if I can handle much more..only to find, that of course..these meds dont work either..
anyhow..thnx for listening guys(and gals) and I appriciate the replys.
Joe
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Charlie
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Re: Getting too intense..need advice(sorry its lon
« Reply #6 on: Jul 26th, 2003, 3:50pm » |
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Sad to have to welcome you back Joe.
Bob and the rest of our brain-damaged members know their business. I'd see a neurologist though. Cleveland Clinic is a pretty big deal for so many things. It's worth a try. You'll go through some really boring but painless tests. Make sure he is willing to listen.
Charlie
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AdamK
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Re: Getting too intense..need advice(sorry its lon
« Reply #7 on: Jul 26th, 2003, 4:50pm » |
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Hey Joe:
Sorry to have to read what your going through, my prayers are with you, and please, I believe I could speak for everyone, no need to apologize.
I (thankfully) just ended a four week episode and I too didn’t know how much longer I was going to be ale to take. I was pf for 5 years prior.
Since I can no longer take imitrex, I was prescribed depakote and used oxygen for the first time. I really have to say the O2 was great for on the onsets. I also went to acupuncture for treatment and he prescribed a tea that I drank 2x a day. The acupuncturist diagnosed the problem as too much heat coming from the liver and small intestine (a fire/water ying/yang thing). He showed me the exact path from both organs to where the pain in my head was. Who really knows if he was right, but the funny part is, out of all the doctor’s I had seen, right or wrong, it’s certainly the clearest explanation I got.
I truly suggest trying more holistic remedies. I also did a lot of research on treatment with shrooms which I really thought was going to work but I couldn’t get my hands on any.
Keep trying different things and more importantly -- hang in there!
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cathy
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Re: Getting too intense..need advice(sorry its lon
« Reply #8 on: Jul 26th, 2003, 5:01pm » |
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on Jul 26th, 2003, 4:50pm, AdamK wrote:| I also went to acupuncture for treatment and he prescribed a tea that I drank 2x a day. The acupuncturist diagnosed the problem as too much heat coming from the liver and small intestine (a fire/water ying/yang thing). He showed me the exact path from both organs to where the pain in my head was. |
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I bet after that he showed you the bill.... ;D
Joe does however say O2 is great and so he's not all bad, Imitrex too!
Welcome to you sorry your having a bad time, hope you find something that works for you soon, hang in there....
Cathy
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| « Last Edit: Jul 26th, 2003, 5:03pm by cathy » |
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AdamK
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Re: Getting too intense..need advice(sorry its lon
« Reply #9 on: Jul 26th, 2003, 5:05pm » |
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Yea of course, but I was much happier paying this guy $40 than than the emergency room that percribed vicodin for CH's. ;D
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| « Last Edit: Jul 26th, 2003, 5:06pm by AdamK » |
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cathy
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Re: Getting too intense..need advice(sorry its lon
« Reply #10 on: Jul 26th, 2003, 5:09pm » |
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Im not disagreeing with you, just think you'd have been better saving the $40 and doing neither... 
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jonny
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Re: Getting too intense..need advice(sorry its lon
« Reply #11 on: Jul 26th, 2003, 5:16pm » |
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Cycle or no cycle get your ass to a fuckin doctor that knows WTF hes talking about.
WTF does being in or out of cycle have to do with anything?
Jesus christ!!!!....you fuckin episodics ought to stop fucking whinning and go see a doc....christ!!!!
............................jonny
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catlind
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Re: Getting too intense..need advice(sorry its lon
« Reply #12 on: Jul 26th, 2003, 5:42pm » |
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Actually Adam, the origin of CH is now believed, and proven as far as they can, to be the hypothalamus.
The hypothalamus governs and regulates a great deal many other organs and hormones, but they now know that it is a derangement/deformity that occurs in the hypo.
The interesting thing they have learned is that the default is only present while in cycle for episodics. So that's why we episodics avoid the docs jonny LOL
More to come on all this when the convention report is finalized and goes live.
Cat
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jonny
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Re: Getting too intense..need advice(sorry its lon
« Reply #13 on: Jul 26th, 2003, 6:14pm » |
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on Jul 26th, 2003, 5:42pm, catlind wrote:The interesting thing they have learned is that the default is only present while in cycle for episodics. So that's why we episodics avoid the docs jonny LOL
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Sounds to me that "If im not in pain why see a doc"
Am I wrong?
Why would you wait for the pain to start to see a doc about getting prevenitives...am I missing something here?
...................................jonny
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catlind
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Re: Getting too intense..need advice(sorry its lon
« Reply #14 on: Jul 26th, 2003, 6:32pm » |
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LOL nope you're not wrong. And no not really missing anything. As a chronic you don't get a break. Some episodics continue to take a preventative year round, where as others of us don't.
For me it doesn't make sense to take something when I am out of cycle. Before I start a cycle, I will go and check it out, but as a general rule so far, I can't take any preventatives anyway, so the pain is the only time it's an issue.
At least until I got trex, now I will keep going so I can keep refilling and stock up 
Cat
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FrankF
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Re: Getting too intense..need advice(sorry its lon
« Reply #15 on: Jul 26th, 2003, 6:39pm » |
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on Jul 26th, 2003, 6:14pm, jonny wrote:
Sounds to me that "If im not in pain why see a doc"
Am I wrong?
Why would you wait for the pain to start to see a doc about getting prevenitives...am I missing something here?
...................................jonny
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Why take preventative meds if you don't need to be taking them? Some meds lose their effectiveness if you take them over a long period of time.
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jonny
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Re: Getting too intense..need advice(sorry its lon
« Reply #16 on: Jul 26th, 2003, 6:45pm » |
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BINGO Cat,
You dont need to take anything when your not in cycle but why would someone wait till the pain started.
Could run down every thing that didnt work as prevenitive and abortive and plan for the next cycle.
JMMFHO....................................jonny
"Why would you wait for the pain to start to see a doc "ABOUT" getting prevenitives"
Looks like your sucking your tail again one this one Frank.....
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| « Last Edit: Jul 26th, 2003, 6:56pm by jonny » |
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Hooter
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Re: Getting too intense..need advice(sorry its lon
« Reply #17 on: Jul 26th, 2003, 6:46pm » |
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I'm sure this is a personal thing but I feel the same way as Cat.
If our experts recommend taking an occasional 'holiday' from Verapimil, even if you are chronic, then they must be concerned that long term constant use is not ideal. I would therefore rather not take it at all when out of cycle and would prefer to rely on abortives. Since I understand that it takes a while for Verapimil to take effect, that means for me it would probably be pointless ever taking it if I continue, God willing to be episodic rather than chronic.
I can equally understand episodics who would want to prevent the cycle happening at all.
As usual, it is a very personal thing what we like to do to our bodies.
Hooter
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smfaison
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Re: Getting too intense..need advice(sorry its lon
« Reply #18 on: Jul 26th, 2003, 6:49pm » |
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Joe W,
Sorry you are back in a cycle. I have had these things for my whole life (47 years) as an episodic. Fortunately for me, I get them for 4 months, every other year. I would say start with a neuro to try to figure out what works for you. I was having great success controlling them with Prednisone, Sansert, and the Imitrex injection if all else failed. Then they took Sansert off the market, so I had to start from scratch. Now I take Verapamil, which I was using as my blood pressure medication anyway. I added Depakote, but that didn't seem to be doing anything. But when my neuro added something called Bellaspas, I've been doing great. I went 15 pain free days in a row. Then I had a HA last Sunday, but have been PF since. He also gave me a nasal inhaler of Stadol, which knocked me on my butt when I had the headache last weekend, which was exactly what I wanted. For me, once I found something that worked, it worked forever. The Prednisone, Sansert, Imitrex routine worked for me for many years and I would still be on that if they hadn't stopped distributing Sansert in the U.S. Hope this helps.
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catlind
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Re: Getting too intense..need advice(sorry its lon
« Reply #19 on: Jul 26th, 2003, 6:52pm » |
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Jonny you're right. If you know when your cycle is going to start, then going in 2 weeks or a month before hand would be the smart thing to do so that you can avoid as much of the pain as possible.
It is a personal choice, and everyone has different reasons for doing things the way they do them, I personally think if I can avoid any of the pain I will.
Course now that I've been approved for Imitrex injections, life just got a WHOLE lot better.
Hopefully the move will help too, knowing that Dr. Bigal thinks environmental and cold regions play a part, perhaps I can get lucky and be one of the ones that gets a 2 year holiday.
My luck I'll go chronic LOL
Cat
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FrankF
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Re: Getting too intense..need advice(sorry its lon
« Reply #20 on: Jul 26th, 2003, 7:00pm » |
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on Jul 26th, 2003, 6:45pm, jonny wrote:BINGO Cat,
You dont need to take anything when your not in cycle but why would someone wait till the pain started.
Could run down every thing that didnt work as prevenitive and abortive and plan for the next cycle.
JMMFHO....................................jonny
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Ah! I got your point now. I agree that if would not be wise to wait until the pain starts and have no meds on hand at all. I currently have 10 Imitrex statdoses, 10 Maxalt MLTs, and 120 verapamils. Ready for next time.
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Hooter
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Re: Getting too intense..need advice(sorry its lon
« Reply #21 on: Jul 26th, 2003, 7:07pm » |
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Dear Joe
Sorry, didn't address any of what you said really.
Personal viewpoint again, but aren't they always.
I think a lot of management of pain is about your 'attitude' and approach to it. Fear for example can make pain miles worse. I found that having a neuro who diagnosed, understood, and then communicated with my Doctor about what to do was the best thing that could have happened. I saw him only once, and then only briefly as he diagnosed in about 30 seconds flat, I have not seen him since but it is a fantastic 'safe' feeling that he is there if I hit problems again.
It just makes everything seem more 'in control' somehow.
Sorry, not making much sense, but for me it helps psychologically as well as medically.
Hoot
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joe_w
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Re: Getting too intense..need advice(sorry its lon
« Reply #22 on: Jul 26th, 2003, 10:42pm » |
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on Jul 26th, 2003, 5:16pm, jonny wrote:Cycle or no cycle get your ass to a fuckin doctor that knows WTF hes talking about.
WTF does being in or out of cycle have to do with anything?
Jesus christ!!!!....you fuckin episodics ought to stop fucking whinning and go see a doc....christ!!!!
............................jonny |
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First of all johnny..I have been to a Dr. that knows WTF he is talking about..however, he happened to move on, and his replacement is in the dark on this as is most Drs. in the the civilized world.My question wasnt about SHOULD I see a Dr., but which kind.That certainly doesnt seem like whinning to me..but your response makes it sound as though you are!I assume by your response that you were chronic and not episodic..How many meds have you taken and wondered..did the cycle get broke by the meds, or the time was just up?Being chronic, I would assume that you knew if the meds were working or not.I dont take meds when not nessasary, however (thanks to my drug plan) I always have at least 90 maxalt and 120 verapimil on hand (3 month supply)I dont mind spending the $2.00 and having it around..I do mind taking meds that dont work.And as for having a plan, yes I do have a list of all previous meds that didnt work, and before the next cycle(if like before)due in Nov...I plan on meeting with a new Dr. (what kind?..hmmm..that was the original question) and having new meds prescribed and in the medicine cabinet waiting to see if that will finally be the right combination.By your response I have to assume that you have a good Dr. who has been able to perscribe the right combination of meds and cured you . You are a lucky one..I have read that no cure has been found.As a side not johnny..I have had these over 20 years..3 cycles a year(I did skip the last 4 years for some unknown reason)usually lasting about 8 weeks. Average 5 h/a a day, lasting an ave of 1 hr and 15mins. Most h/a are in the 5 to 6 range on the scale, with the peak ones hitting an 8..maybe 9.(yes I chart them too)Throw in all the side effects from various meds from throwing up to total buzz, and I have yet to miss even 1 day of work because of it..you know why?..I dont whine about it..Thats life..it sucks, but its what I have to learn to live with..Get off the soap box.(btw johnny..because of the women of the forum reading this, you might have noticed that I can refrain from having to insert 4 letter words to get my point across)
As for the rest of you who has responded, I thank you. It sounds as though the Neuro is the popular way to go. I have made a dozen or so calls to local GP's and most are either not accepting new patients, or has never treated CH's,and I would rather not go to one who is in the dark and have start over.So it looks like Mon. morning a call to the Cleveland Clinic is the first order of business.
Thanks everyone..wish you all PF nites.
Joe
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don
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Re: Getting too intense..need advice(sorry its lon
« Reply #23 on: Jul 26th, 2003, 11:00pm » |
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When I am not in cycle I take no meds at all.....but........
I stay in touch with my neuro and he calls in an Rx as soon as I request it, make an appointment and go see him. I know what works for me and he agrees that I would know best. I'm in an unussual position for a sufferer.
I have an aggresive, knowledgable and compassionate neuro. Above all he respects MY opinion as a sufferer and allows me to actively participate in treatment choices. He has, in the past, asked me to spend time with his student interns to explain to them what happens in the life of a sufferer.
Go search out a good neuro Joe.
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Georgia
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Re: Getting too intense..need advice(sorry its lon
« Reply #24 on: Jul 27th, 2003, 2:06am » |
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Joe - Sorry they came back after 4 years. Shit, after four years of being pain free, I would have tried to erase any trace of CH from my life...meds, drs, you name it. I would really like to have a break not only from the pain, but from THINKING about the pain. Sometimes I think the dread and the fear and the preparation and the thoughts that are always there are worse than the actual pain. Uhhh...then again, maybe not.
What dose of verapamil are you on? Upping the dosage has helped a lot of people return to PF.
In my opinion, it isn't the kind of dr that truly matters - be it GP or neuro, it is their experience, knowledge, and willingness to learn/listen/trust. I think more people will recommend a neuro because they SHOULD be more versed in CH. The world doesn't always work that way though. I have been to several neuros during my years with CH, and I have to tell you - 1 was a god as far as I am concerned, 2 were total and complete ignorant not a very nice persons. I may be jaded though - I am coming off a horrid experience with a horrid neuro just last week. He literally walked out on me and refused to treat me. Why? My only guess is ego. He didn't want to have a patient that took an active role in their treatment and went in with a list of suggestions from, as he said as sarcastically as he could "the internet" or perhaps he didn't want a patient that knew more about CH than he did. I then sat through my husbands appointment with his GP (my hubby is also a CH'er) and listened to them openly discuss his CH and try to come up with a solution TOGETHER. My point is - in my opinion in has more to do with the actual person than the specialty.
Oh and one more thing: Go to the OUCH site (link to the left). There will you find a listing of CH recommended dr's listed by area. And while you are there, join. It's free.
Welcome home again. Your room is just as you left it.
Peace and love,
Georgia
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