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Topic: Back from the Neuro (Read 2210 times) |
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KristenF1977
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Back from the Neuro
« on: Dec 11th, 2007, 3:16pm » |
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So today's visit went well. He was unhappy to see me of course, but he was ready to attack the beast. He is a real sweetheart, and understands CH's. He has a few patients who experience them. He gave me a script for a 10 day run of Medrol? (sp), a steroid. Also, he gave me 6 boxes of Imitrex injections that he had as samples as well as a script. He also rx'ed Verapamil, 120 mgs. The Imitrex will help big time as my insurance only covers 1 box a month. He was surprised that my headaches were every other day, but plans to attack them agressively.
All in all, I am happy that he understands what we are all going through.
Heres to pain free days ahead. 
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BaseballCoach
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Re: Back from the Neuro
« Reply #1 on: Dec 11th, 2007, 3:33pm » |
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I will say that my insurance only covered 4 boxes a month when I first started which were fine....My headaches increased drastically and now I struggle getting by with 8 boxes. I had to get my doctor to call the insurance company, explain the situation, and they covered more....Maybe you could try that. My doc is also good about samples. I went yesterday and he gave me 10 shots....That's about 750 bucks and he hands them out like candy! LOL....
HOpe all goes well for you!
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yikes-another-one
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Re: Back from the Neuro
« Reply #2 on: Dec 11th, 2007, 3:34pm » |
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hurray for a good and knowing doctor.
sorry you are suffering so frequently.
perhaps the cycle will disappear whil you
are on the steriod.
one year I had my widsom teeth pulled and for three
joyous days, not CH symptoms.
No pain, had energy to burn,
and a strong memory and organizational ability.
wsn't even dsylexic or nuthing.
then, the steroid wore off, and it was
back to carrying pen and paper everywhere,
resting often and saying, "What?" alot.
and the pains came back too....
oh well.
here's cheers to you for the help you are getting,
and cheers for a good five days pain free.
hugs.
TJ
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NJRik
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Re: Back from the Neuro
« Reply #3 on: Dec 11th, 2007, 3:35pm » |
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Sounds like you've a great Doc now try for oxygen it will make the shots last much longer.
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Guiseppi
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Re: Back from the Neuro
« Reply #4 on: Dec 11th, 2007, 6:19pm » |
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The dosage of verapamil is really low for what people usually need for CH. Obviously work with your doctor but most people don't find relief at the dosage doctors are used to prescribing. Don't be suprised if you end up doubling or tripling that dosage.....again ONLY under the advice of your doctor.
And another push for the oxygen, 30 years and it's still my first line and most effective abortive.
Guiseppi
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vietvet2tours
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Re: Back from the Neuro
« Reply #5 on: Dec 11th, 2007, 6:33pm » |
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Yep oxygen.
Potter
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E-Double
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Re: Back from the Neuro
« Reply #6 on: Dec 11th, 2007, 11:08pm » |
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verap very low
steroids will give ya a break but verap should prob be higher and once roids where off you will prob get hit again hard...bummer
take nexium or previcid b/c roids will give ya mad reflux
OXYGEN
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
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KristenF1977
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Re: Back from the Neuro
« Reply #7 on: Dec 12th, 2007, 8:45am » |
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I dont want an Oxygen tank in my house, and I am not going to lug one around with me in my car, to the store, etc. The imitrex shots kick in very fast for me, and I prefer to use them as an abortive. I inject myself, sit for a while, and they go away. Also, the Verapamil is 120mg per tablet I believe. He was concerned because my blood pressure was on the low side. I trust him, and what he has given me has worked for me in the past. I am not big on taking medication, so I will stick with what I am doing. The steroids stopped my cycle completely last time.
I do feel for those who are cronic, and have to be on heavy meds. But, Oxygen and alot of medication is not for everyone.
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| « Last Edit: Dec 12th, 2007, 8:47am by KristenF1977 » |
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Sean_C
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on Dec 12th, 2007, 8:45am, KristenF1977 wrote:| I dont want an Oxygen tank in my house, and I am not going to lug one around with me in my car, to the store, etc. |
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I know its type, but that came across sooooooooo bitchy to me 
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seasonalboomer
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Re: Back from the Neuro
« Reply #9 on: Dec 12th, 2007, 9:21am » |
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Kristen,
I understand your trepidation regarding oxygen. But I will ask you to not totally dismiss oxygen. I keep only 2 "E" tanks at a time and they are stored in a closet on a little cart. When I feel a hit, I roll my little set-up out into our guest bedroom (when there are no guests of course), turn on the regulator and within 10 minutes or less -- it is most often gone. The cost for the "oxygen per snuffed out headache" (OPSOH) is far lower than Imitrex and it is just oxygen, no meds at all.
As for its dangers. They are very minimal. If you are not a smoker and try to avoid sitting around a room full of lit candles while you are using it there is virtually no risk at all to its presence in your home. Used for the proper amount of time there is very little risk of any physical issues.
My wife doesn't really like to see the O2 around (because she thinks of "old people" when she sees it) she knows that the relief it has offered me is a miracle compared to having me roll around on the floor in pain. So, in the end, she gets it, I respect her and put it away when I'm done and the only impact is that I only have to use Imitrex about 1/5 of the time I get CH's.
Scott
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KristenF1977
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Re: Back from the Neuro
« Reply #10 on: Dec 12th, 2007, 10:02am » |
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on Dec 12th, 2007, 9:19am, Sean_C wrote:
I know its type, but that came across sooooooooo bitchy to me
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Theres nothing bitchy about it. It's a personal preference, and I prefer not to use Oxygen. Just because it works for everyone, dosent mean that I can't choose not to use it. What I do for my headaches works fine for me, and it has in the past, without Oxygen.
Whats wrong with me not wanting to use it? And have to wheel around Oxygen with me?
Don't judge me because of my decisions.
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Kevin_M
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Re: Back from the Neuro
« Reply #11 on: Dec 12th, 2007, 10:12am » |
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I agree with Scott (seasonalboomer) here concerning oxygen.
Quote:| the relief it has offered me is a miracle compared to having me roll around on the floor in pain. So, in the end, she gets it, I respect her and put it away when I'm done and the only impact is that I only have to use Imitrex about 1/5 of the time I get CH's. |
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I know you have said this...
Quote:| Oxygen and alot of medication is not for everyone. |
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and this:
Quote:| I am not big on taking medication, so I will stick with what I am doing. |
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Don't look now, a few meds are already a part of your treatment, too.
on Dec 12th, 2007, 8:45am, KristenF1977 wrote:The imitrex shots...
the Verapamil...
The steroids... |
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Oxygen would be a good consideration, especially with the verap that low, the steroid wears off, and samples dry up and insurance is one box a month.
Give it closer thought.
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| « Last Edit: Dec 12th, 2007, 10:13am by Kevin_M » |
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seasonalboomer
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Re: Back from the Neuro
« Reply #12 on: Dec 12th, 2007, 10:16am » |
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on Dec 12th, 2007, 10:02am, KristenF1977 wrote:
Theres nothing bitchy about it. It's a personal preference, and I prefer not to use Oxygen. Just because it works for everyone, dosent mean that I can't choose not to use it. What I do for my headaches works fine for me, and it has in the past, without Oxygen.
Whats wrong with me not wanting to use it? And have to wheel around Oxygen with me?
Don't judge me because of my decisions.
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Sorry sweetie. A lot of people come here and look for options and opinions on what seems to work for each other. I, for one, learned a lot here, took some advice and my life was changed for the better. So pardon us for wanting to contribute more ideas to your seemingly complete treatment regimen.
Also, you don't have to wheel it around. For me, for instance, a lot of my hits happen at home, where it is easy for me to access O2. I choose to not take it with me and rely upon Imitrex for out-of-home hits if they happen. So its not as big a deal as you portray. Just another tool to make life with CH manageable.
Scott
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KristenF1977
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Re: Back from the Neuro
« Reply #13 on: Dec 12th, 2007, 10:19am » |
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I am well aware that I am taking medications, but like I said, my blood pressure was low, and the dr was concerned. Just because I have these headaches, does not mean I should jeopardize my health because of them by taking medication that can dangerously lower my blood pressure.
None of us are happy we have these headaches, but I think people need to be a little more respectful when it comes to the way people choose to handle it. I did not use oxygen last cycle and I made it through. I plan to do the same this time.
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KristenF1977
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Re: Back from the Neuro
« Reply #14 on: Dec 12th, 2007, 10:24am » |
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on Dec 12th, 2007, 10:16am, seasonalboomer wrote:
Sorry sweetie. A lot of people come here and look for options and opinions on what seems to work for each other. I, for one, learned a lot here, took some advice and my life was changed for the better. So pardon us for wanting to contribute more ideas to your seemingly complete treatment regimen.
Also, you don't have to wheel it around. For me, for instance, a lot of my hits happen at home, where it is easy for me to access O2. I choose to not take it with me and rely upon Imitrex for out-of-home hits if they happen. So its not as big a deal as you portray. Just another tool to make life with CH manageable.
Scott
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Yes, but it seems that on this board, if you dont use oxygen, you are not doing the right thing.
What I have done in the past works for me. I was in cycle last time for 2 weeks, and although I know many people here get hit alot worse than I do, and more frequently, I still suffer from these headaches, and do what's best, and what has worked, for me.
I get hit in the middle of the night. When this wakes me out of a deep sleep, I walk downstairs, get my needle, and inject myself. I sit on the couch, and wait for it to go away, and it does.
I have plenty of Imitrex to get me through this cycle, and will use it as needed. It works for me. End of story.
I appreciate all of the advice, I really do. That's why I come here.
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Kevin_M
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Re: Back from the Neuro
« Reply #15 on: Dec 12th, 2007, 10:26am » |
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on Dec 12th, 2007, 10:19am, KristenF1977 wrote:| people need to be a little more respectful when it comes to the way people choose to handle it. |
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Certainly. This was just a little curious, that's all.
Quote:| I am not big on taking medication, so I will stick with what I am doing. |
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Quote:The imitrex shots...
the Verapamil...
The steroids... |
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Just commenting to think ahead if the verap should be ineffectual when the steroid wears off. Imitrex quantities can be limited.
*I didn't catch your previous post when writing this.
I hope it is a short cycle. 
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| « Last Edit: Dec 12th, 2007, 10:28am by Kevin_M » |
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sandie99
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Re: Back from the Neuro
« Reply #16 on: Dec 12th, 2007, 2:45pm » |
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I'm glad that your neuro is concerned about your BP; when I used verapamil, mine dropped a lot when I was taking a low dose of verap. In fact, I nearly fainted several times.
Another neuro upped my dose and wonder of wonders; my BP didn't drop!
I believe that a lot of people mentioned oxygen to you, because it works for so many people and comes with less amount of side effects. I know that it doesn't work on everyone, but personally, I'd try it, if my neuro would allow me to do that (doesn't believe in 02). It's one thing to know that it doesn't do any good than not ever giving it a chance. You know yourself what works for you, so trust in that, but keep your mind open, ok? I've seen myself how treatments quit working, and in that situation it's useful to have next option ready.
I hope that this will be a short cycle and followed by long remission!
PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Ray
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Re: Back from the Neuro
« Reply #17 on: Dec 12th, 2007, 3:18pm » |
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Dear Kristen:
A few things. First I would like to welcome you here to the nut house. We tend to be like a family and have strong opinions. We really, truly are trying to be helpful, rather than judgemental.
My father once told me (Hi Guiseppi!) that the wonderful thing about advice is that you don't have to take it.
I too use oxygen so that I don't need to take the Imitrex shots as often. I've used Imitrex since 1993 when it became available in the US. Since then, I've had multiple thousands of shots, and it gets old, believe me.
If you don't want to use oxygen, I can respect that. Please keep it in the back of your mind should Imitrex fail to be a complete abortive solution. Others here have had good results from energy drinks that have 1000 mg of taurene and caffeine, if used quickly. Many of us drink coffee as an abortive. There's been discussion of other alternatives as well. One or more of these may help.
There's information on the OUCH website about how to get insurance to cover more Imitrex, and there are "patient assistance programs" through GlaxoSmithKline and others that can pay for more.
Please think of us like family, we may provide advice that you don't want to hear, and don't intend to follow, but it's the advice of people who learned the hard way, over many years. We truly want the best for you.
Thanks for reading,
Ray
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You have my prayers and compassion-I'm right there with you.
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*While we have the time, let us do good*
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KristenF1977
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Re: Back from the Neuro
« Reply #18 on: Dec 12th, 2007, 3:42pm » |
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Thank you so much everyone, and I will definitely keep an open mind.
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E-Double
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Re: Back from the Neuro
« Reply #19 on: Dec 12th, 2007, 5:21pm » |
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Take a breath hun!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Sean_C
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on Dec 12th, 2007, 10:02am, KristenF1977 wrote:
Theres nothing bitchy about it. It's a personal preference, and I prefer not to use Oxygen. Just because it works for everyone, dosent mean that I can't choose not to use it. What I do for my headaches works fine for me, and it has in the past, without Oxygen.
Whats wrong with me not wanting to use it? And have to wheel around Oxygen with me?
Don't judge me because of my decisions.
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Where did I judge, I simply stated that you seemed bitchy. That would be more stereo "typing" my dear. And I still feel that way, but thats unimportant, this is an open forum.
I have no opinion whatsoever regarding your prescription and/or nonprescription uses for your headaches, rest assured.
I wish you well.
Sean.................................
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Linda_Howell
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Re: Back from the Neuro
« Reply #21 on: Dec 12th, 2007, 6:59pm » |
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I, personally would never ever put a steroid in my body. Nasty stuff. I look at my 02 bottle with a combination of love and respect. Mine is on a portable cart and I keep it in the back-seat of my car. If I get hit while I'm not at home I simply go to my car and huff it for 20 mins. and I'm able to continue doing what I was doing. It's cheap, effective, safe and a WHOLE lot nicer to the human body than steroids or Trex.
These people here are just trying to help. 
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vietvet2tours
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Re: Back from the Neuro
« Reply #22 on: Dec 12th, 2007, 8:15pm » |
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on Dec 12th, 2007, 9:19am, Sean_C wrote:
I know its type, but that came across sooooooooo bitchy to me
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Well ya can lead a horses patoot but ya can't lead em far.
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thebbz
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Re: Back from the Neuro
« Reply #23 on: Dec 12th, 2007, 9:00pm » |
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Imitrex shots= 70 bucks each.
O2=10 to 20 bucks each.
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rolo65
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That M tank next to my bed is my best friend almost every night. It is faster and safer than any of the drugs that can cause heart problems. If you don't like the tank don't feel alone because the beast doesn't like the O2 ether. 
PS: I keep 2 E's in the truck, but don't get hit in the day much now that I'm on the lithium (doing good at 450mg a day)! 
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| « Last Edit: Dec 14th, 2007, 1:28am by rolo65 » |
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