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        Cluster Headache Help and Support >> Cluster Headache Specific >> kip8
        
(Message started by: agonymum on Jan 17^th, 2006, 6:48am)

Title: kip8
Post by agonymum on Jan 17^th, 2006, 6:48am

pleesestlk to me goinn up

Title: Re: kip8
Post by Kate in Oz on Jan 17^th, 2006, 7:03am

[smiley=hug.gif]

hang in there... wish there was something i could do to relieve your pain :'(

will happily chat with you if that helps :-/

Kate

Title: Re: kip8
Post by maffumatt on Jan 17^th, 2006, 7:19am

:-[

Title: Re: kip8
Post by agonymum on Jan 17^th, 2006, 8:15am

so sorry for the above post , i was really desperate .
i think it was a 10 in the end , i feel shattered , luckily my mother called round and just sat with me till it had gone . i thought i was definately dying .
i am going to the doctors later , to explain that i have been on here and figured out what it is , i hope she is understanding and can give me something . i only have my lovely hot water bottle , but it went nowhere near this one , i think thats what frightened me too.

thanks for listening xxx

Title: Re: kip8
Post by Phil the Desert Rat on Jan 17^th, 2006, 8:38am

So sorry you're suffering with this too...there is so much good info and people on here to help prepare you for your doctor visit, and I wish you success in this. I find that a cold towel helps me survive the bad ones better than heat...works on the shadows, too...I used heat for the first few, thinking it was sinus (misdiagnosis)...but a cold towel definitely works better for me. You'll get through this...my best hopes for you!

--Phil

Title: Re: kip8
Post by agonymum on Jan 17^th, 2006, 2:16pm

thankyou for your support ,

i have just returned from the doctors and explained everything to her AGAIN , but with the added info from here , (i took a list of possible drugs , both abortive and preventative ) .
she said i couldnt have any of those drugs because i am bi-polar , and they all affect the serotonin levels in the brain .
i was gutted , i asked for a private referral again to see a neuro , and am hoping they will have some answers for me about the whole sorry mess .
also said that , the neuro would be the person to talk to about oxygen and that it was very rarely perscribed as it was pretty dangerous . overall , she made me feel like a fraud .
she also said that it may not be clusters because i am experiencing them everyday and that is not the norm , so it could be migraine instead , id given up by them and said nothing .
she has perscribed some betablockers (propranonal ) , i doubt they will do anything .
anyone else had these problems , ? i know its a long shot but if there is anyone reading this who has bi-polar and clusters ?? how do you manage ?? and what meds can you take ?

thanks again for reading
with love xxx

Title: Re: kip8
Post by LeLimey on Jan 17^th, 2006, 2:37pm

Please please please call the ouch uk helpline.
There are other CH sufferer's there who can help you. I don't know enough to help you so I'm going to give you the best advice I can and get you there.
The number is 0161 2721702
Please call, I'll be thinking of you
Helen

Title: Re: kip8
Post by agonymum on Jan 17^th, 2006, 2:54pm

thanks helen , i will call them ...xx

Title: Re: kip8
Post by pubgirl on Jan 17^th, 2006, 3:33pm

Hi there

I'm sorry you are in so much trouble and getting so little help from your GP.

I hope you have called the Helpline as there are rather a lot of things to ask you and even more things to tell you as your GP is talking rubbish and we can help you get the right treatment for whichever type of headache condition you have.

It would get a bit long winded to do it all on here and it is better talking to a real person on the 'phone who is a knowledgeable sufferer themselves and can go through it all with you.

Wendy

if you want to do a bit more reading of UK specific stuff you can also go to www.clusterheadaches.org.uk. There are a lot of links at the top to treatments available and also a link through to the Main Site menu where you will find more information

Title: Re: kip8
Post by joke ten dam on Jan 17^th, 2006, 4:23pm

hang in there and if you nead someone to chat to when others are in bed I am then maby available becaise I live in the netherlands. You can find me on yahoo messenger. under the name of poldertocht

Title: Re: kip8
Post by Karla on Jan 17^th, 2006, 5:06pm

I have schizophrenia and take antidepressents (cymbalta currently) but have been on elavil(amitriptaline), effexor, celexa, and wellbutrin. As far as antiphycotics go I have been on abilify, seroquel(on both currently), geodon. And lithium for ch. I take up to 4 20mg nasal spray of imitrex a day as needed in the past. I haven't needed imitrex so much the last couple of years because I found something to prevent my ch from occuring. I still use it for migraines as needed.
I have tried and taken all the triptans over time and prefer imitrex. I would find a knowledgable neurologist and get some meds. Your mental health should not be preventing you from taking the ch meds. Talk to a pharmacist also if you don't believe me that it is ok. Good luck!

Title: Re: kip8
Post by agonymum on Jan 17^th, 2006, 6:09pm

i do believe you karla why wouldnt i ?
, thankyou so much for letting me know that and the meds you have been on past and present.
at the moment im on 1000mg depakote (sodium valproate) and 30mg citalopram, daily .(previously effexor)
i was on lithium for a 4 year stretch , but it didnt suit me too well and i decided to come off it .(to my peril)
i dont have any anti-psychotics at the mo , so thats a plus , i guess but have been on halopiridol in the past .

its made me so happy to learn that you are able to take the imitrex nasel spray , as i was really hoping to try that , and i will push for it at my neuro apt .
also interesting to note that you had lithium perscribed for your ch, i could maybe have that introduced to my stablizing meds .

thanks again karla,and good luck with everything .....xxx

( i really think my doctor is a joke now and it shouldnt be allowed !)

Title: Re: kip8
Post by Phil the Desert Rat on Jan 17^th, 2006, 6:49pm

Are you taking SRI (seratonin reuptake inhibitor) meds for your bipolar? Seratonin is a more active agent in chronic depression, but has only a minor role in bipolar...though many people are still treated for bipolar with SRI drugs. Meds that control GABA (brain neurotransmitter) are much better at evening out bipolar swings in many people. Ask your doctor about Lamictal in conjunction with Gabitril...both have worked wonders for me. Paxil (an evil SRI) nearly drove me insane, and did nothing for the bipolar swings.

I mention all of this because most CH meds are compatible with GABA meds as used in treating bipolar. In fact (and ironic...), the two drugs I mention are also used to some success in treating other types of chronic headache pain (sadly, no efficacy with CHs).

If you're anything like me, you will probably be devoting much of your upcoming days in reading up on CHs and treatment regimens. But when you have time, read up on the ineffectiveness of SRIs in treating bipolar...in fact, it can be downright dangerous. There are more effective bipolar meds out there that are safe to take with CH meds (verapamil, imitrex, ergotamine, etc.). In any event, I wish you luck. Let me know what you find.

--Phil

Title: Re: kip8
Post by FramCire on Jan 17^th, 2006, 7:03pm

OK. Before we go on, if your GP said that you may not have CH because you get headaches everyday, obviously the GP doesn't understand CH.

However, it is possible that your GP might have seen something else that he/she didn't explain well.

You need either a new Dr or to talk to your Dr again. I am not sure how O2 is dangerous either. It is possible that there is a lot more going on here that we can not understand.

I wish I could be more help. Please use the contact info above. They should be more help.

Title: Re: kip8
Post by agonymum on Jan 17^th, 2006, 11:52pm

phil , hi - and thanks,

yes citalopram is an ssri, i do suffer with depressive side of bipolar more chronically than the manic and some trycyclics have induced mania in the past

i am more than willing to try a new trycylic though and also very interested in lamactil as a mood stablizer with anti-depressant properties . lamactil is from what i can gather a GABA stablizer.
however , so is depakote , my current stabilizer so ?

its all so complicated eh, but will be sure to get the right combination sometime soon , i have appointment with psychiatrist also to discuss all this , on 24th --so ill keep updating .

Title: Re: kip8
Post by Phil the Desert Rat on Jan 18^th, 2006, 12:39am

Please do keep me posted. I sure wish you the best in dealing with your psych and doctor, and I hope they'll be able to come up with a combo that works for you.

I deal with the depressive side of bipolar as well. Tried Depakote 3 years ago, but had no affect on me. The Lamictal and Gabitril have worked wonders...no depressive collapse in a year now, as opposed to 4 times a year in the past. Even through the headaches, I managed to not "fall off the edge."

Again, I wish you all the best, and keep me posted! You'll find a way through this.

--Phil

Title: Re: kip8
Post by RichardN on Jan 19^th, 2006, 1:15pm

Make sure you speak with the OUCH UK folks about your difficulty in getting an oxygen script . . . they might be able to offer some suggestions/shortcuts.

The dangers of 02 are discussed on the "oxygen info" link to the left. Mainly, you don't smoke while using 02 . . . your clothes can absorb the 02 and ignite . . . . so wait a few minutes before lighting up. Common sense . . . like not smoking while you fill your gas tank. DO NOT USE THE STRAP ON THE MASK! When you get the hang of using it, you can be wakened by the beast, hit the 02, lay back down a fall asleep . . . . if you do this with a non-rebreather mask, you will awake strangling (when the tank runs out) or stand the possibility of breathing an entire tank of 02 at high volumn . . . which could be dangerous (I don't recall posts documenting side effects of this, but I'm sure there must be some). If you just hold the mask in place and fall asleep, it will fall away and you'll just wake with an empty tank.

GET IT! USE IT! YOU'LL LIKE IT!

Be Safe, PFDANs

Richard

Title: Re: kip8
Post by sandie99 on Jan 19^th, 2006, 1:19pm

agonymum,

this is the place to vent whenever ch is giving you the hard time. I'm glad your wrote! :) I hope you're feeling better. :)

Wishing you PF time,
Sanna