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Topic: Saw Neuro last week (Read 320 times) |
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MattW
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Saw Neuro last week
« on: Jul 28th, 2005, 2:00pm » |
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I saw a Neuro last week for the first time,seems like a ok guy,
So I tell him my story that I suffer from Clusters,blah,blah,blah and what I take and have been on, so he decides to put me on Verapamil and wants to see me in 30 days.I was like great,I'll give it a try and hopefully it will kill my cycle.
Holy crap I am getting slammed now,I guess it helps some suffers but it's making this cycle even worse than it was,double the headaches and double the pain!!!
I am calling him today and telling him I'm not taking it anymore.I think he will put me on Lithium to see if that helps.My Primary had me on Pred and it didn't work this cycle.
Is there an end to this cycle????It's killing me slowly.
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I'd be good to go if this little "F'er" would leave me alone
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MattW
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Re: Saw Neuro last week
« Reply #1 on: Jul 28th, 2005, 2:12pm » |
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I just did a 30 day taper of Pred.,didn't work. It completely killed my cycle last fall but just didn't work this go around.
How long does it take for the Verapamil to build up enough to take effect? I have been on it for a week and as I said I think its giving the reaction I wasn't looking for,,.MAKING IT WORSE!!!
Anybody else have a bad reaction to Verapamil??
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nani
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Re: Saw Neuro last week
« Reply #2 on: Jul 28th, 2005, 2:15pm » |
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The thing about these is that they don't kill you...they just make you wish you were dead.  Don't surrender!! Are you using any abortives Matt? Like oxygen or triptans? The verap needs to build up in your system for awhile before it's effective. Your CHs may be getting worse on their own. Some use verap and lithium with good results. Hang in there!! Pain free wishes, nani
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MattW
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Re: Saw Neuro last week
« Reply #3 on: Jul 28th, 2005, 2:21pm » |
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Yes I use Imitrex injections and sometimes a crap load of coffee or Redbull if caught in enough time.
And yes 2 Redbulls on approach of the devil usually does the trick in about 15 minutes.
When I call my Neuro back I'm going to ask for Oxygen,he had mentioned it to me but stupid me just walked out with the Verapamil scrip.
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nani
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Re: Saw Neuro last week
« Reply #4 on: Jul 28th, 2005, 2:27pm » |
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Good. Make sure you let him know you need high flow (10 - 15 lpm) and a non rebreather mask. Keep fighting... pain free soon wishes, nani
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jcmquix
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Re: Saw Neuro last week
« Reply #5 on: Jul 28th, 2005, 2:34pm » |
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Matt.. Nice too meet you, wish it was not here though..
I know what you mean about the HA's, but if you have a good Dr, try to work with him/her its hard to find someone (Dr) that understands what CH is let alone how to treat it and what will work for you...
I am going through Flip-Flops right now, I have a few good days, then I get the Shit SLAMMED out of me at night for no reason at all...
Have you tried the Melatonin and/or Benadryl ?
I use 9-12mg of Melatonin & 50mg Benadryl @ night, about 30 minutes before bed and take a hott shower.
It took about 3 nights to start working for me.
I am just at a weird place with my cycle, I get 3-4 nights good sleep. Then I get 3-4, every time I close my eyes I get woke up feeling like someone is KICKING me in the head.
I am taking Depakota ER 1000mg a day (script), works great for the daytime hits, have not got one in about 2 weeks, I do still get alot of Shadows, but not a full blown HA.
Are you using anything to Abort the HA?
I use Trex inj @ .2ml, per HA (ck the tip to the left). I usually will use about 1 or 2 a night when I am getting hit hard, but if it feels light, I have been tryin the O2, still have to work on it, but the O2 will work once you get used to using it.
Sorry to go on so long, I really just wanted to say check out the TREX & O2 link to the left, Work with your Dr, just hang tough... we are all here..
Fight the Good Fight..
PFDAN's to YOU !!!
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Topical
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Re: Saw Neuro last week
« Reply #6 on: Jul 28th, 2005, 4:48pm » |
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Verapamil is what I take. I noticed it taking 1.5 to 2 weeks before it starts working. It's important not to miss any dosages. Unless you can't handle the side effects I would try it for another week.I am getting hit once a week compared to two times every other day.
You are doing the right thing in calling your doc, ask him for his advice. I can only tell you how it worked for me. We're all different so what works for me may not work for you. I hope you find some relief.
Definitely try O2 if you haven't before. It is an abortive med. Get on it immediately after you feel one coming on. Your script will need to be for the O2 and a mask. (Companies require a script for the mask).
Take care.
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MattW
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Re: Saw Neuro last week
« Reply #7 on: Jul 28th, 2005, 5:07pm » |
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Topical, What side effects do you get ?
This cycle is going on 3 months and I am to the point it's a waste to go to work.Head is rarely clear,always tired and this cycle is all over the place and getting worse.
Not so much clock work,gettimg more and more sparatic.
I am a self employed carpenter and it is getting very old trying explain things to people and they just can't comprehend,.
We need a new medical name for these beasts ,
Cause people just think headache.
I think I may start telling people I have a blood clot disorder in my head, it's called "I think my head's gonn'a explode syndrome"
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Topical
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Re: Saw Neuro last week
« Reply #8 on: Jul 28th, 2005, 9:59pm » |
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When I was trying to find a workable dose of Verap. I felt weak legged, dizzy if I got up too fast, sort of weak all around. The doc lowered the dose and I kept with it.
Now I take small dosages and the worst complaint is some mild constipation.
For me, it takes 1.5 weeks before it does anything. I will then notice some skipping of attacks. A week later I will be PF for a week at a time. After two weeks of being completely without attacks I will taper it off to see if the cycle is over. If not, then I will ramp it up again and wait some more. Like other meds, you have to make sure to take it as prescribed, one missed dose could mean you will get hit. (I learned that lesson).
My best advice is to call your doc and let him know how you feel. If you're side effects are manageable and not too bad, then keep taking it until you talk to him. If you can't stand the side effects or don't like it then stop the med. Either way, talk to the doc ASAP and ask him questions.
jcmquix, advice above is good, read it over. He just started up with the verap and was still getting hit at night. I don't know if that is what you are seeing. He uses Imitrex and O2 for aborts. He takes melatonin and benedryl at night.
I would definitely try the O2. Demand it. You can abort HA's in 5 minutes and it can cap the attacks at a low pain level. The important thing is to get to it as soon as you feel one coming on. The longer you wait, the higher the cap so-to-speak.
I've had it knock down attacks before they ever got anywhere. Only once it took 25 minutes to work. The usual time is 5-15 minutes for me. It doesn't work for everyone, only about 60 percent or so. But if you try it and it works it will be your best buddy. It's a big rush when it kills that HA in it's tracks. No side effects (athletes take it on the side-lines, so you may even feel better than before the attack). Docs would rather hand out free samples of Imitrex than O2.
Some doctors are adverse to giving O2 scripts which I just can not understand at all. Imitrex can be dangerous compared to O2 which isn't dangerous(just flammable). I don't get it. If your doc stalls in giving the script for it, ask him why. Ask him what the side effects are. The only thing they say is "Your insurance may not cover it".
Do we care about that if it means getting rid of the pain? I bought a big O2 setup for 350. Others have bought smaller ones for 150. Get a script, rent it and see if it works. I have mine available 7/24 365 days a year just in case. No going to the pharmacy or doctor for more drugs. No fear that you can only take 2 more injections that day. If you get a script it should be for 10-15 liters a minute and should include a non-rebreather mask on the script. (They won't sell you a mask unless it's on there).
If your doc is iffy on it, ask him to consult the latest research while you wait. O2 is the preventative of choice now, not Imitrex.
Read this article, it will help you out. It's dated 2/05.
http://www.aafp.org/afp/20050215/717.html
Take care, I hope you get PF soon.
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| « Last Edit: Jul 28th, 2005, 10:01pm by Topical » |
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RichardN
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Re: Saw Neuro last week
« Reply #9 on: Jul 28th, 2005, 11:28pm » |
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Hi Matt and ditto the above.
02 is my only abortive (can't take triptans) and I can usually kill the bastard in minutes if caught early . . . . I'm never far from my tank. GET IT AS SOON AS POSSIBLE! . . . and make sure you get the correct regulator and mask.
When I first came here and found out about the 02 and Verapamil, the doc started me on low dosage . . . .had my first PF day at 240mg (had three that night, but the 02 kept them at a lower intensity than if I had been without it). Got sustained relief at 360mg. Many take considerably more and in combinations with other meds.
Water/water/water and try to identify your triggers.
Be Safe, PFDANs
Richard
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Cooked Brain
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Re: Saw Neuro last week
« Reply #10 on: Jul 29th, 2005, 5:21am » |
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on Jul 28th, 2005, 4:48pm, Topical wrote:| I noticed it taking 1.5 to 2 weeks before it starts working. |
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First time I took it I had the same, headaches got worse first week, but after two weeks and boosting the dosage to 360mg/day (3 slow release pills) the cycle was abandoned. How much verapamil are/ were you on Matt?
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MattW
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Re: Saw Neuro last week
« Reply #11 on: Jul 29th, 2005, 6:43am » |
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120MG a day
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Cooked Brain
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Re: Saw Neuro last week
« Reply #12 on: Jul 29th, 2005, 9:39am » |
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you might need to double or even tripple that...
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wip5150
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Re: Saw Neuro last week
« Reply #13 on: Jul 29th, 2005, 2:00pm » |
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on Jul 29th, 2005, 9:39am, Cooked Brain wrote:
you might need to double or even tripple that... |
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Agreed. My current cycle has been my longest (going on week 13) and has had the most painful peak. I started verapamil (120mg three times a day) almost three weeks ago. Finally after about 10 days I saw some relief and have been pain free (other than shadows) for nine days. I'm going to give it another week then I will begin to taper off to see if I'm going out of this cycle or not.
Get a higher dose and keep a positive attitude. Best of luck.
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MattW
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Re: Saw Neuro last week
« Reply #14 on: Jul 29th, 2005, 2:55pm » |
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Arh MF!!!!!!!
My Neuro isn't back in office til Tues,another Neuro called me back a said go ahead and double your dosage by taking 2 120ml at same time once a day,he wouldn't do anything about the Oxygen,said I had to wait to talk to my doc about it. 
Called my Family doc. office and they wouldn't do anything for me
I've already taken 12mg worth of imitrex today,guess I'm going head to head til about midnight.
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I'd be good to go if this little "F'er" would leave me alone
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Topical
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Re: Saw Neuro last week
« Reply #15 on: Jul 29th, 2005, 6:30pm » |
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I'm glad you were able to talk to someone. Sorry to hear that your doc was out.
I hope you see some improvement with the stepping up of the dosage. It's a good idea to keep a little journal and list the number of headaches each day, the intensity, the duration and the time they hit.
You may want to take some more fiber like metamucil or something. Hang in there.
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