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Topic: Old visitor, back (Read 279 times) |
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docblondie
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Old visitor, back
« on: Aug 9th, 2005, 10:42am » |
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Hello all,
I am returning to say hello and to get established on the board again.
I just entered another difficult cycle. Grrrr!
I am on topamax (300mgs) Verapamil SR, 120mgs- I have low blood pressure and cannot tolerate higher doses. Also taking perdnisone spurts 80mgs tapering to 10mgs over 5 weeks. Have imitrex (split into 3 doses per shot) My neuro. prescribes the vials rather than the stat dose refils, so it is much easier to load my own insulin syringes- how cool! Also have O2 and ativan to sleep when I am terrified that another HA will hit after I fall asleep- the usual time they strike.
I have an spt. this Friday with my neuro. and will ask about kudzu- but am aware about the imitrex and verapamil dangers of mixing.
Anyone have anything else I am missing about meds. or what else I can do? I drink 2 gals. of water a day- stay away from the usual triggers.
Do guided imagery and biofeedback. Manage stress...
What am I missing? any suggestions?
I read the drinking urine link and am not sure about that one...... 
~chris
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unsolved1
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You're on a high dose of Topamax...beware of kidney stones ... keep drinking alot of water.
I don't think anyone here will recommend that you drink urine. 
May your cycle end quickly ... goodluck
PF Wishes
UNsolved
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LeLimey
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Re: Old visitor, back
« Reply #2 on: Aug 9th, 2005, 10:51am » |
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Hi Chris.. ignore the urine thread. I think someone was taking the piss there 
Sounds like you are pretty much up to speed! I'm interested in your verap and topomax doasage, I'm just starting on the topomax to work up to that dose but retaining the verap at 120mg. I have extremely low BP too and can't tolerate it but my neuro is reluctant to take me off it altogether hence the minute dose.
Check this website for further kudzu info
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu&PH PSESSID=6caa9365cf330c748256b1e993948db3
I think you are right to check it out with your neuro before taking it especially since you have low BP but there is fantastic anecdotal evidence on threads here especially amongst episodic sufferers so its very encouraging. The above site is put together by one of our own, floridian and is very informative and accurate.
Let us know how you get on with your neuro.. sounds like you will be able to help out alot here with answering others questions and giving support so welcome to the crew!
Pick up an oar, you're rowing next to me!! 
Take care
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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jcmquix
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Re: Old visitor, back
« Reply #3 on: Aug 9th, 2005, 10:53am » |
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on Aug 9th, 2005, 10:49am, unsolved1 wrote:
I don't think anyone here will recommend that you drink urine.
May your cycle end quickly ... goodluck
PF Wishes
UNsolved |
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Hi Chris....
Sorry you are back, but its nice to meet you...
Can't we all just forget about the Urine thing...  
PFDAN to You !!! 
Charlie
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LeLimey
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Re: Old visitor, back
« Reply #4 on: Aug 9th, 2005, 10:57am » |
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on Aug 9th, 2005, 10:53am, jcmquix wrote:
Can't we all just forget about the Urine thing...
Charlie |
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What... you mean like water under the bridge???
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jcmquix
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Re: Old visitor, back
« Reply #5 on: Aug 9th, 2005, 11:05am » |
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on Aug 9th, 2005, 10:57am, LeLimey wrote:
What... you mean like water under the bridge??? |
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There goes my Lunch again....
Blech, Blech, Blech......
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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docblondie
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Re: Old visitor, back
« Reply #6 on: Aug 9th, 2005, 11:36am » |
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LeLimey,
The topamax and verapamil combo seem to make the HA's easier to tolerate- they move down the scale to about a 6. and I seem to have to take less imitrex to stop a HA. I have been up to 400mgs of topamax for about 7 months w/o side effects (bad ones) only poor taste in my mouth, bad dreams and poor appetite. I have been up to 480mgs of verap. but got too dizzy when standing and BP went down to below 90/60 which is my normal bp. (90/60) so I had to stop in fear of my heart stopping- not bad compared to a bad cluster ha!
Hope you have a good exp. with topamax.
~Chris
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LeLimey
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Re: Old visitor, back
« Reply #7 on: Aug 9th, 2005, 12:15pm » |
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Chris wow.. deja vu!
I too got up to 480 on the verap but had to taper back down for the same reasons my normal BP is 90/50. I tend to use O2 99 times out of 100 to abort though since it works so well for me and using my clustermasx means I can abort in 5-10 minutes tops.. usually 5 so I stick with that.
I'm looking forward to seeing how you get on now since we've had alot of similar experiences! The only thing I would say, and I'm sure you are very aware of it, is be careful of the pred. Long term effects are not good. It's a case of weighing up the pain relief against those and I for one will not knock you for wanting to be pain free. I just wouldn't be much of a person if I didn't make you aware of the risks of long term steroids, especially having suffered them myself.
Make the best decision for YOU okay?!!
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docblondie
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Re: Old visitor, back
« Reply #8 on: Aug 9th, 2005, 7:39pm » |
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on Aug 9th, 2005, 10:51am, LeLimey wrote:Hi Chris.. ignore the urine thread. I think someone was taking the piss there
Sounds like you are pretty much up to speed! I'm interested in your verap and topomax doasage, I'm just starting on the topomax to work up to that dose but retaining the verap at 120mg. I have extremely low BP too and can't tolerate it but my neuro is reluctant to take me off it altogether hence the minute dose.
Check this website for further kudzu info
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Kudzu&PH PSESSID=6caa9365cf330c748256b1e993948db3
I think you are right to check it out with your neuro before taking it especially since you have low BP but there is fantastic anecdotal evidence on threads here especially amongst episodic sufferers so its very encouraging. The above site is put together by one of our own, floridian and is very informative and accurate.
Let us know how you get on with your neuro.. sounds like you will be able to help out alot here with answering others questions and giving support so welcome to the crew!
Pick up an oar, you're rowing next to me!!
Take care
Helen |
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Helen,
You sound(type) British + the flag. My distant brother lives in London- are you anywhere near there- Hackney. Plus, can you explain your signature- pick up an oar, you're rowing next to me- I'm perplexed...
~chris
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LeLimey
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Re: Old visitor, back
« Reply #9 on: Aug 10th, 2005, 6:44am » |
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Hello again Chris,
I type with an accent?! No I don't!  I don't have an accent you do!
Originally I'm from London, I was born and bred there but I now live in Nottingham which is about 90 minutes by train.
The pick up an oar and start rowing is a standard phrase used here. We're all in this "Boat" of CH together, its a relatively unknown disease, people have a hell of a time getting diagnosed, getting the right meds... getting a cure is going to be an uphill struggle as there simply aren't enough of us to interesst the big drug companies. Therefore if we want to get out of this mess we have to put some effort in oursleves hence the pick up an oar and start rowing! You have a great deal of knowledge about CH and meds from your posts so far, there is alot of help and advice you will be able to share, I think you will be an asset to us here! (Maybe in teaching me English for a start?! )
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