So i just went to my Nerologist yesterday and being that Verapamil is lets just say not being tolerated well by my stomach at a low dosage and my headaches are getting worse he is taking me off and upping me on Topamax to 350mgs. As far as abortive DHE spray Migranal makes my Head hurt worse, Triptains make me have panic attacks, throw up, and rebound, Narcotics take the edge off sometimes but cause rebound, he has perscribed me Toradol injectable, Some injectable anti nausea, injectable benadryl, injectable DHE. Has anyone else tried this during a attack and for anyone else i do have Oxygen with the whole CH set up 25lpm. I have been on Lithium as well. Caused more CH.

vhonmhar wrote on Aug 16^th, 2012 at 12:39am:

Maybe one of the most piss poor plans I've come across yet. I can kill a ch. in ten minutes or less with O2 at 25lpm.  with a non-rebreather mask.

                 Potter

Potter wrote on Aug 16^th, 2012 at 12:49am:


i'm asking for advice like i said i have oxygen at 25lpm with a no rebreather mask and it does not work for me with a K-10. i really don't understand why you have to come so shitty at people if there giving there honest advice to people of something that honestly worked for them, Sorry if it doesn't work for you. I don't bash everyone that Oxygen works for just because i don't normally get relief from it because i no most people do,  same with Verapamil. This site is to help people not be rude !  vhonmhar ; Thanks for your advise, I appreciate it Since the increase on my Topamax i have not had any CH which i think is a coincidence. i have been chronic for years. but every 4 or 5 months i will get maybe a 3-4 day break then i'm back at 3-6 CH a day. so lets see i'm praying its actually the Topamax fingers crossed. but i have not had to try the meds yet. i will post when i do. As i see it it is better the me having to deal with the side effect from the other medications I.E (Triptains, Migranal,Narcotic) he said if this doesn't work, we will be talking about surgery =/

Lance, I'm glad Oxygen works for you, I'm happy people find relief for these things, because boy do they suck and oxygen is a hell of a lot cheaper in the long run then the other stuff, lol ! it will  somewhat help for shadows but nothing over a 5 for me. Im increased my Topamax from 150mgs to 300mgs on Monday the 13th and have had no CH since =) i also increased my melatonin from 10mgs to 15mgs. Im enjoying these PF days because it has been a really long time ( atleast 5months since i have had a PF day ) i feel like a million dollars =))))). Thank you for your kind word, i appreciate it so much.

Lydia,

With all due respect you need to read more of Potter's posts.  You will not find a more caring, helpful individual on this board.  He does not deal with BS, and will call it what it is quicker than most.  To some this is to strong, but for me, having been around this place a long, long time I appreciate that he cuts to the chase and is willing to be blunt when people are doing things that will not be helpful in the long run.  In fact, if they continue some of the medications at the levels they take them for long periods of time CH will be only a shadow of their problems.  He cares enough that he comes around this place as he has for years now to help others find a way to get relief.  He does not need to do so, and he is not here for himself (other than for camaraderie).  Go back and reread his post and think about what he really wrote rather than what you thought he wrote at first glance.

I'm sorry you are intractable and O2 does not work for you.  You said you use a no rebreather, but what kind do you use?  If you are using the type given out by the oxygen suppliers that may be your problem.  I quit using oxygen a few years ago saying it didn't work for me, but when I started using the O2ptimask at 25 lpm it made a world of difference.  I can knock a K7 out in 5 mins and a K8 in 8 mins with it.  For $30 it is well worth the investment.

I'm glad the Topomax seems to be working for you.  I used it one time and couldn't remember my address the next day.  That was the least of the side effects.   I too am intractable and chronic.  Batch's Vit D regimen has helped mute them somewhat, but nothing has stopped them for long. 

All the best,
Jerry

In the last 37 years I have been given hundreds of meds, tried in many combinations. For me, anything that seemed to work eventually made me sick or caused rebounds... both just add stress to an already bad situation. Luckily O2 works for me, my only non-toxic option. Sounds like you need more options too. Have you visited Clusterbusters.com ?

i still feel there are other ways this could be said to someone who is new to the site without coming off as rude. Potter i don't know what you mean by learn how to read the board. what would you like me to read that i haven't already? Well CH has returned still haven't got any of my medications in local pharmacies do not carry and i have to get them threw hospital pharmacy's, but also dealing with pre-auths.

Lydia, you are being dealt a rough hand here, and I know you are suffering. I am sorry for that as are we all, and I pray you will find relief soon, like yesterday. I also know how unrelieved suffering can play havoc with our moods and nerves. Having said that, let me point you aren't a newcomer here, so surely you've seen some of the outright crazy and sometimes downright dangerous posts from trolls who really have no interest here? I'm trying to say after awhile you begin to sniff those posters out right quickly, and very seldom are we wrong.

In Vohnmar's case, we weren't wrong. His post is dangerous to newcomers, leading them down a bad path in a dark alley. Better to call him out early than for an innocent to be led astray. God bless. lance

Quote:


That's a fair question. To begin with, I read your posts through again and as I thought, nowhere do you indicate you are under a doctor's care. You mention a neuro in 2009, and you mention a doctor whom your wife knows who suggested she could try....see? Self treatment is by itself dangerous and we try to discourage it. If you are being treated by a headache specialist and not simply a nurse practitioner, I am sorry. I missed it.

Second, there are much better means of addressing CHs than acetaminophen (paracetamol) and NSAIDs (toradol). Neither are meant to be taken long term, and almost universally have no effect on CHs.

Third, I'm glad it worked for you. Nowhere were you attacked personally. It was the "plan" you described that was denegrated. In general it is not a good plan for CHs. Just curious though, did you try the O2? blessings. lance

Ok i just want to post one last thing and then im done with the drama because that is not what this board is about and im really sad to see a new board member go over this =( I just felt like it was harsh. I know it was not directed at me, but im one to stand up for others especially someone new. He doesnt know Potter or that potter  often comes off as "gruff" because he cares. Simply because he is new. That's it. I've spoke my peace on that subject. Now on Toradol. I tried it last night and boy o boy it did not do a damn thing for me, i no none of you want to hear this but dilaudid does not do a great deal unless given threw IV at the ER normally a couple time but the pill form will somewhat numb the pain, but the pill form 2mg of Diludid does a hell of a lot more the 2ml Toradol. WORTHLESS  for me sadly. BACK TO THE DRAWLING BOARD ! by the way im back to 6 CH a day again so it wasn't the Topamax sadly, at least i did not get my hopes up. I think i will be going the clusterbuster route as my next treatment!  Fingers crossed !

lydia nichole wrote on Aug 22^nd, 2012 at 2:34pm:



Good luck Lydia, let us know how it goes.