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Topic: What do we do now? (Read 443 times) |
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jmc1106
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What do we do now?
« on: Aug 28th, 2005, 9:18am » |
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I am actually a supporter, my husband has gone two years, and now is back in cycle (I see there are a few others who are back after two years). I printed out a terrific study I found here on treatments, and took it along to the doctor, who just dismissed it. Absolutely refused to consider oxygen (she's never prescribed it before, the suggested rate is too high, you would need to be in the ER to get that much oxygen--I guess you guys are all just in my imagination), refuses to prescribe prednisone, prescribed Verapamil...and even when I asked if it would be tapering up to a stronger dose, all we got was an RX for 120 mg once daily. And we got an RX for more Imitrex pills.
When the CH's got much stronger Friday night, we decided to switch over to two leftover Imitrex injections for the Saturday night hit. I used the Trex tip and gave half a shot, but he got hit by two more CH's before the night was over. That has NEVER happened before. So we have half a shot left that he can take for the day. I'm convinced that while the shots knock the headache down quickly, they are also making him have more of them.
How hard is it to find a Neuro who will prescribe oxygen? We live in Nebraska, if that helps any. Is there any other way of getting it, besides going to the ER? That is just not practical, and we don't know for sure if they will give it to him either.
Sleep deprived,
Jan
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nani
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Re: What do we do now?
« Reply #1 on: Aug 28th, 2005, 10:47am » |
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Get a new doctor. It doesn't have to be a neuro.
pain free wishes, nani
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jcmquix
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Re: What do we do now?
« Reply #2 on: Aug 28th, 2005, 10:54am » |
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Hi Jan...
I am a CH Suffer'er myself, I was almost 3yrs before my last cycle started on June 1st and I am finally catching a break, but I know that this last cycle was the worst that I have had in alot of years. I do not know if its the Weather or what, but alot of the people here are saying that this round of cycle's is the Hardest in a long time.
As for the Dr's, I just went through 3 Dr's before I found one that would give me the Script for the O2, now their are aome threads here on using Weilder's O2 and Getting a Regulator from places like E-Bay. I got the Script for the O2, but my Insurance would not cover it so I bought a samll system out of my pocket. Cost around $200.00.
As for the TREX pills.. They never worked for me, by the time they kicked in my HA was gone, Need to PUSH the Dr HARD for the TREX inj.
I also was getting what seemed like rebound HA from taking to much TREX, once I cut back to using 1/3 of the vial, I did alot better. Try dividing it up into 3 diabetic syringes also.
Has your Husband tried using the Melatonin ? I started using it about 1 week into my cycle (9mg about 30 minutes before bed, along with 50mg Benadryl). It takes about 3 or 4 days to actually start working, but it took away almost all of my night time hits.
You can get the Melatonin at Walgreens,Walmart or Publix. You want to get the 3mg pills. If you have any questions PM me..
Also get you Husband here on the site to read and talk to the other CHer's here, that brought me alot of relief, just knowing I was not alone.
If You or the Hubby need to ask a Question, need to Rant or just talk, there is always someone here, the lights are always on 24/7/365.
Thanks for Supporting your Husband, my Wife is my Best Supporter Too, Her Name is Sassy_Lady (Jolene)...
Wishing PFDAN's to your Hubby & some rest to You !!
Charlie
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| « Last Edit: Aug 28th, 2005, 10:55am by jcmquix » |
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BMoneeTheMoneeMan
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Re: What do we do now?
« Reply #3 on: Aug 28th, 2005, 11:01am » |
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Man, I am so sorry to hear about this doctor that is obviously a bad human. This person has the ability to help your husband without using narcotics, and outright refuses. This is what i would tell that doc: 
You should find a new doc immediately, neuro or GP, just find one.
He is taking melatonin and benadryl at night? Verapimil has worked for him in the past?
With the Imitrex thing.....could be either one (according to my experience). Could be taking a little too much Imitrex and that causes a rebound, or he could be taking a little too small of a dose. Seems weird, though, that if he took 3mg he would still get hit that same nite.
I typically take only about 1.7 to 2.5mg of solution per dose.
It is possible that Imitrex is not a good drug for your hubby. Not all drugs work on all people. Even if it just reduces a CH from a kip-9 to a kip-5, I would call that a winner.
PF wishes to your hubby. Make the call to the doc office or the insurance company asap.
PF wishes
BMonee
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Think of how stupid the average person is, and then realize half the population is stupider than that.
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Chillrmn1
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Many insurance companies recognize oxygen as treatment for clusters. Have you tried going to your insurer's web site? Mine has a page for clusters and treatment which includes oxygen. I'm with the others, suggest you find a different Neuro or Dr.
Bob
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| « Last Edit: Aug 28th, 2005, 12:40pm by Chillrmn1 » |
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floridian
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Another vote for a new doctor. My doctor has been open to trying new things as long as I can show that there is a reasonable basis for it - usually abstracts or studies are enough.
The doctor doesn't have to be a cluster headache specialist, or even a neurologist. They do have to have be open to learning, especially if the patient is doing most of the research for them!!
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LasVegas
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Re: What do we do now?
« Reply #6 on: Aug 28th, 2005, 3:48pm » |
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Definitely get new doctor. Realiztically, the 120mg of Verapamil is not going to be very effective immediately nor in a couple weeks. Prednisone is often administered to act as an abortive preventative while a higher dosage pf Verapamil (sustained or non-sustained release) is in the process of kicking in. In the meantime, oxygen is much safer han Imitrex or other Tryptan drugs like Zmig. o2 can be purchased, look in the phne book under oxygen and also welding equipment and supplies....may be of help. If you do need a script for it, go to a doctor who will write one the way it needs to be prescribed...if insurance does not cover it, pay cash. As for Imitrex, usually a haf a dose of the injectin (3mg) instead of the full 6mg shot proves effective for many of us. I would highly receommend printing some of the info from this site on the right side of the screen under the tabs....cluster quiz, cluster traits, oxygen info, medical info and also from the headache archives.....come up with some basics highlighted as a doctor will most likely not take time to read all of it and just preview the highlights in a nutshell to educate the doctor. Unfortunately CH's affect so few people, believe the last statistic I heard was 1 in 1,000, that it is not cost-effective for insurance and pharmaceutical companies to educate the public and medical community on this disease. Good luck with everything, we are all here for your support and answers if we can help....Gregg in Las Vegas
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Wishing all a Pain Free 2008!
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Charlie
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Re: What do we do now?
« Reply #7 on: Aug 28th, 2005, 4:59pm » |
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Lots of good ideas to be found here and let us know how you're doing.
Here is something that helped me:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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jmc1106
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Re: What do we do now?
« Reply #8 on: Aug 28th, 2005, 5:36pm » |
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Gads, what a hassle, but we made a little headway today. I called the doctor's answering service so I could get a refill on the Imitrex injection for tonight...ahem, they do not process prescriptions or refills on weekends. So what am I supposed to tell my husband, please don't have a cluster tonight?!
So we went to the Urgent Care Center, which I figured would be a joke. Turns out we got a PA whose father has clusters, and she understood what was needed. She told us to double the dosage on the Verapamil to 240 mg, and gave us the name of the clinic where she works. They have 5 other cluster patients, and are willing to prescribe oxygen for use at home. She also gave us an RX for Imitrex injections to get us through the night. It took us three pharmacies to get the darn things, driving through a hail storm that dented up my van, insurance wouldn't cover it, but at least we got it done.
Never tried Verapamil before, and yes he has been taking 9 mg of Melatonin each night since Monday but it doesn't seem to be making a difference.
Tonight will probably still be awful, but at least I feel like we are moving in the right direction. Thanks for all the great advice, I will print out for my husband!
Jan
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seasonalboomer
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Re: What do we do now?
« Reply #9 on: Aug 29th, 2005, 9:06am » |
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Jan, that's great news. I'm not a big believer in "angels" but there are times when fate puts you in a place for one soul to touch another's. After reading your first post I was really steamed. I hate hearing about bad doctors, because their are good ones and more that are opening their minds to some of the info that is being compiled here. Then to get to your post about finding someone that will help you and your husband. Their are good people out there aren't there. As for the other doctor you should let that physician know, in writing, about your experience and why your shadow will never grace the doors of his offices again. Good riddance for the closed-minded, ignorance that he purveys.
Good luck with he O2. Make sure you get the high flow rate 8-15lpm with a non-rebreather mask.
Scott
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lionsound
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Re: What do we do now?
« Reply #10 on: Aug 29th, 2005, 8:12pm » |
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what a great experience! a nice way to get things going in the right direction. 
Jan, please keep us updated on how you both are doing.
Be well and PF!
-lionsound
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jmc1106
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Re: What do we do now?
« Reply #11 on: Aug 29th, 2005, 9:42pm » |
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Well, if you can believe this, after doubling the Verapamil to 240 mg, NO clusters last night or today (just some mild headaches). Four hours worth of running around yesterday to get more Imitrex injections, and we didn't need them (but I am NOT complaining!) Hubby looks like a new man today, I am so happy! If we get through tonight too, I will be ecstatic, whoo hoo!!! (And I slept 12 hours last night, that helps too)
Jan
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docblondie
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Re: What do we do now?
« Reply #12 on: Aug 30th, 2005, 7:15am » |
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Sorry to hear you have gone through this! If you're at all close to Sioux Falls, SD, I saw a neuro. there- I reccommend Dr. Carol Miles- She is excellent- Even give her a call she may have some contacts near you-
her number is 605-332-1610
Best of luck.
~Chris
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jcmquix
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Re: What do we do now?
« Reply #13 on: Aug 30th, 2005, 7:45pm » |
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I hope things are going good and you both are getting some rest and the Hubby is getting some PF Time...
Tell him I hope to see him on here soon, It will do him some good to talk to some people and vent a little and maybe get a laugh...
Wishing the PF Time stays Forever....
Charlie
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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