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i_hate_the_pain
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New with a few questions..
« on: Jun 19th, 2004, 10:39am » |
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Hello everyone,
I guess this is where I belong.. Though not what I wanted.
I have just been diagnosed with Chronic Clusters, though not sure how the Neuro came up with that being this is my first time experiencing anything like it! Well besides having headaches for 3 weeks straight back in 1994 with a negative CAT scan.
Well I started having these episodes of pain located around my left eye, forehead, temple and bridge of my nose that would just come on in seconds last anywhere from 15-40 minutes, and then poof gone. It started oh back in April. The 23rd to be exact. I went to my GP and she sent me to a Neuro. He did an MRI & MRA with Contrast and it came back negative, though it was nice to see I really do have something in my head.He put me on Verapamil 40 mg 3 times a day, then upped it last week to 120mg 3 times a day, It is helping some, as I am not getting as many as I was, plus they are not lasting as long and the pain isa little more tolerable not like the intensity I was getting at 10, now they range about 4-8. Anyway I went to see him on Friday and he now wants me to take TOPOMAX 25 mg at night and see if that puts it into a remission.
I have heard/read some bad things about TOPO, except the weight loss, which I could use, so before starting it I woud like to get some good and bad from those whom have been on it. Also has anyone taken it with Verapamil at the same time?
I am usually good with not getting side effects. Matter of fact Dr warned me about the Verap and I have not had any side effects. Even my blood pressure has not dropped like they warned me, staying at 117/77 and has even gone up a bit since taken Verap.. (Neuro got me a Digital BP Monitor for home)
Now as for something to abort the pain. What do you recommend? I asked my Neuro about O2 and he said he does not give it for home use.  Said I could only get it at the hospital!  Has not mentioned anythign else about things to abort. To me, and I am new some don't yell at me, it seems he is just giving me things to try and prevent and not worrying about anything to STOP the madness and pain! I go back to him in 3 weeks and if the pain is not gone what should I be asking for to stop the pain? I tried everythign from Tylenol with codiene to Firocet to Ibuprofin 1000mg And nothiong keeps the pain away. Plus by the time I take one the cluster is gone. Yeah it may stop the pain from the next one, but after 2 hours nothing is stopping the pain.
Well I would appreciate any and all advice I can get.. The pain is getting to be just that a pain.. And having to get up 3-4 times a night and want to slam my head to stop the pain is getting to me. I want a good s night sleep again.. I want to go a day without pain in my left eye!
So what I am taken now is 120mg 3 times a day of Verapamil. Dr wants me to take 25mg of TOPOMAX at bedtime, anyone who has taken the combination if you can share your experience good or bad, please it would be appreciated..
As for insurance I have great insurance. No questions asked about anything I have taken or tests performed. Did not even need pre approval for the MRI or MRA which I had both done.
I don't need referrels or even have to list a primary DR. So in a way I am lucky there because if I don't like the way this Neuro handles things I can just change. Anyway thank You in advance for any advice you can offer on how to handle this beast!
Thank You
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ave
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Re: New with a few questions..
« Reply #1 on: Jun 19th, 2004, 11:18am » |
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Sorry youhave to be here, but it is THE place to be for getting the right info.
I hink you said it exactly about your neuro - he is playing at prevention but does not realise we clusterhead need something abort attacks.
The abortive of choice seems to be Imitrex injections but there are other meds around. Check out the buttons on the left.
I can vouch for O2, but realise it does not work for everybody. If the doc will not oblige, you could get welding O2 (a number of people here use it) and arrange for a special valve/coupling. Best person to ask is jonny, who has done it before and usually is able to help in telling you how to get the right stuff.
Alternatively, you might go to your local fire station if it is near, and explain. They have helped clusterheads before now and were a darn sight more helpful than your ER...
Read all about how to oxy under the button on the left (mask and liters p.m. etc.)
I do not know about Topamax, but you could run a little search on this message board, preferably under Medications with a 3 month to 3 week time setting.
Hope this helps a little!
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BobG
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Re: New with a few questions..
« Reply #2 on: Jun 19th, 2004, 12:45pm » |
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have just been diagnosed with Chronic Clusters
It started oh back in April. The 23rd to be exact.
You are not chronic. Chronic is a measure of time, not the amount of pain or number of daily attacks. Chronic means you have attacks for a year without a 2 week break.
I don’t think your neuro knows much about cluster headaches.
Has not mentioned anything else about things to abort.
Again, your neuro is ignorant about clusters.
He put me on Verapamil 40 mg 3 times a day, then upped it last week to 120mg 3 times a day, It is helping some, as I am not getting as many as I was,
Sounds like you need to up the dose some more. Some people are at 800+ total a day.
I asked my Neuro about O2 and he said he does not give it for home use.
Did you ask why? It is safe, cheap and approved as an abortive.
I want a good s night sleep again..
Maybe you can try melatonin or Dramimine before bed time. It helps to keep you out of the REM sleep mode where the clusters hide
Please let us know how you're doing.
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| « Last Edit: Jun 19th, 2004, 12:46pm by BobG » |
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Karla
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Re: New with a few questions..
« Reply #3 on: Jun 19th, 2004, 1:05pm » |
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I agree with everything Bob G said plus...
I would ask for imitrix injection or nasal spray. They are both fast acting. Under 10 min and the ha is gone. I have taken topamax and it makes you real stupid. Your lucky to remember your name. 25 mg you might as well not take it at all. 200mg is a theraputic range. I tried all the way up to 600mg and it did nothing for me. You have to start at 25mg and then slowly add 25mg every 2 weeks. So maybe that is what your dr is doing. But 25mg by itself wont do anything for you. I would be looking for a new dr. Good luck!
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Karla
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Gator
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Re: New with a few questions..
« Reply #4 on: Jun 19th, 2004, 1:56pm » |
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Welcom to the website. Sorry you had a reason to look us up, but glad you found us.
Like BobG said, you can't be chronic if you've only suffered for 2 months. O2 is the first line of defense for most Cluster Headache sufferers. Usually will abort most HA's in 10 - 20 minutes, which is good, because it can keep your expenses down on abortive medication. No O2 and No Abortive - the dude is No doctor I would stay with. If that's the best your neuro can do, then I would run, not walk to the next one.
If you're sqeamish on giving yourself injections, you could ask for Zomig Nasal Spray. I use Zomig Nasal Spray and it works well for me. Aborts about 95% of the HA's in about 5 - 7 minutes.
I had pretty much the same experience as Karla described with Topamax. (affectionately known as DopeAMax) My wife confiscated my car keys. I was unsafe to drive, had the memory problems and to boot it made my HA's worse. I did not use it in conjunction with Verapamil, so I can't speak to that. I'm sure there are some here that did.
Read all the stuff in the links to the left and on the OUCH website. Print it out and take it to your neuro as he obviously needs training in the treatment of CH.
Again, welcome.
Gator
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Jeff_08
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Re: New with a few questions..
« Reply #5 on: Jun 19th, 2004, 1:56pm » |
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I would ask for IMITREX injections! it's the only thing that helps me.I hope you have good insurance because they cost 130.00 for 2 injections but there is a tip here on how to make them last longer,Good Luck! i hope he give you something to abort!!
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purpleydog
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Re: New with a few questions..
« Reply #6 on: Jun 19th, 2004, 2:38pm » |
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Not all docs, even neuro's are all knowing about clusters. Your best bet is to read everything you can, print stuff off for your neuro,or whoever to read and ask lots of questions.
There is a lot of info here in this website, it has the best information on it, and people here will tell you what works and what doesn't for them.
Make sure you get to this meds board, lots of info.
Sorry you had to come here with your circumstances, but, welcome to the board!
purpleydog
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Superpain
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Re: New with a few questions..
« Reply #7 on: Jun 19th, 2004, 6:28pm » |
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Get a new neuro!
Any neuro that will not prescribe you O2 for cluster headaches is not a good headache doc....
It's also very suspect that your neuro doesn't even know the definition of "chronic". WTF.
Call around and find a neuro that specializes in headaches and has plenty of experience with clusters.
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Chris
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don
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Re: New with a few questions..
« Reply #8 on: Jun 19th, 2004, 7:58pm » |
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Quote:You are not chronic. Chronic is a measure of time, not the amount of pain or number of daily attacks. Chronic means you have attacks for a year without a 2 week break.
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The remission period now is 30 days according to the IHS web site.
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i_hate_the_pain
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Re: New with a few questions..
« Reply #9 on: Jun 20th, 2004, 10:28pm » |
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Thank You for the responses..
I kind of thought the same thing when he said I was chronic . Being I only had something similar back years ago but it did not last this long.
Okay so he is right about them being clusters, but unfortunately he lacks any information on what stops pain.. My sister in law is a Pharmacist and she said to give the Verap about 1 month on the higher dose before starting the TOPO. But she insists I ask for some form of Abortive. So I am going to print up the information I have gotten from you wonderful people and give it to him..
My Sister in Law mentioned MAXALT for an abortive, any advice or success or failures?
Thanks again for the advice I will sure use all I have gathered..
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Lobster
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Re: New with a few questions..
« Reply #10 on: Jun 20th, 2004, 10:59pm » |
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Do a scan on Maxalt... lotsa info here. Is that a tablet?
Not to sound condescending, but if you do not abort through your nose or your arm, then you have a pain fetish.
Everything oral that I know of leaves you sitting on the bathroom floor rocking for 20+ minutes too long BEFORE you know if you need a 2nd hit.
I use Imitrex Injections... but not the Autoinjectors. I do Vials & Syringes.
One vial is good for about 4 doses... I do around .150ml per abort.
100% effective, with relief in 3-5 minutes.
Yes.. I thought needles sucked too. They took about 2 days to get used to. Not shitting you. Plus needle tracks make you look badassed. 'Thems my tracks, biatch!' (joke)
Best of luck to you!
Rokk
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Superpain
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Re: New with a few questions..
« Reply #11 on: Jun 21st, 2004, 5:27pm » |
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Needles in the arm are sooo much better than icepicks in the head. I love needles.
Yep. O2 should be your first choice.
Otherwise, imitrex is my personal favorite. Needles included.
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Chris
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i_hate_the_pain
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Re: New with a few questions..
« Reply #12 on: Jun 22nd, 2004, 10:01am » |
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Okay just a few questions on the Imitrex injections if you don't mind.. You have me a thinking now..
Where do you inject it? Also what is the difference bwteen regular needles and Autoinjectors? Did they show you have to use them in your DRs. office?
My neuro is in a group of 10 Neuros. They group also runs a Headache clinic so I thought he would knwo how to stop this pain.. But I might have to ask to see a different DR in the practice because this one does not seem to listen.. He does not believe in Verapamil, says it does not really work, though my HAs have lessened... But last night I had 3 nasty HAs and this morning woke with a kip 10.. I start the Topo tonight.. I know I was hoping the cycle was breaking my I went a few days with only a few HAs, guess I was wrong.. I left a message on his voice mail to get back to me as I need something that will stop the pain, no more pills!! If he does not call back by this afternoon I am calling my GP and having her handle it.. She is great. I told her of this website and she went and checked it out and said she has learned a lot about the monster and it will help her with other CH sufferers knowing now what has worked and has not.. So she is open to anythign I want to try.. Only problem is she is leaving the practice in 2 weeks to start doing Cardiology. So I have to find another DR like her that is open minded..
Anyway thank you and I need some relief.. And wish you all PF days..
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peter K
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Re: New with a few questions..
« Reply #13 on: Jun 22nd, 2004, 10:50am » |
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"He does not believe in Verapamil, says it does not really work" Does your Dr. have CH?
I take 480mg of Verapamil and 100mg of Topamax daily and when the beast breaks out between 7pm to 9pm, I take a spot of Imitrex nasal spray 20mg and in 5mins or so I am in heaven. Before I didn't have the meds I was getting 4-5 Ha a day.
Tell them you want something to abortive the pain. They have samples in their office!! Find something that will work for YOU.
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Superpain
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Re: New with a few questions..
« Reply #14 on: Jun 22nd, 2004, 5:05pm » |
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You inject it in your arm or hip. The arm is faster. The statdose (autoinjector) pens are simple to use if you want a 6mg shot. 
No way.... I can't hardly handle 6mg.
So if you get those you just use the "shot tip" technique to split shots into more manageable and cheaper yet effective 2 or 3mg shots. Or empty them into a sterile vial and use insulin syringes.
Yes, they should show you how to use them. And once you do it the first time you'll realize it's no big deal, but it's very effective.
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Chris
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i_hate_the_pain
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Re: New with a few questions..
« Reply #15 on: Jun 23rd, 2004, 7:23am » |
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Thank You Thank You
I think I can handle them.. I am going armed when I go to see this Dr. I am insisting on the Imitrex Injects.. I checked with my insurance and no limits on imitrex. So he can't use that as an excuse. This daily pain is driving me nuts..
Thanks a bunch for all the wonderful information..
PF days to all..
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