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Sophia

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Losing Battles but will Win The War
Sep 2^nd, 2008 at 1:53pm

I am very frustrated still. I see the neurologist next Tuesday, get a lithium level done tomorrow, have an appointment with an ear nose thoat doctor for a chronic sinus condition that will probably need surgury and now the beast is hitting at least 8 times a day and giving me about a 30 minute break between hits. I am exhausted. My boyfriend has asked me to stop screaming because it is upsetting him. And when he gets upset he gets migraines and I dont need him sick too. Gee you would think he gets these. The emergency room refuses me treatment because the abortives dont work anymore. I simply cannot find the alternative types of treatments. So I am trying to go to work and school and cope and I just cant. The inside of my head feels raw. I am hoarse from screaming ( I do it when he is gone) energy drinks make me vomit, the pain makes me vomit. I need ideas. I need any suggestions. The online sites to get morning glory seeds are off limits because of the Danish laws about importing plants at least how I understand the laws. I have tried finding the mushrooms and cant locate a supplier and have gone to all the bad neighborhoods in Copenhagen I can find. I am scared shitless. I am afraid of what I will do during the headaches. They make me nuts. Please any suggestions will be appriciated. Sophia

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thebbz

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Re: Losing Battles but will Win The War
Reply #1 - Sep 2^nd, 2008 at 3:23pm

02,is what might really help you.
I sure do hate it for you. Remember ..never quit ever. Sometimes it is very tough to look through the darkness and find some light. Look forward to the appointment with the doc. Family services ,and us all ,are here for you. You are not alone ,and you will get better, dammit.
You could try some strong coffee with lots of milk-vs. energy drinks. Better for the tummy. Try to find some soft drink with high levels of caffeine that you can stomach. 02 can be found at a welders supply, or ER.
You can get alternatives but you have to prepare. Most grow their own medicine.
RC seeds are illegal there? What a world.
Hope you get a break
thebb

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Jeannie

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Re: Losing Battles but will Win The War
Reply #2 - Sep 2^nd, 2008 at 3:39pm

Sophia,

I'm so sorry for you. Thebb has given you very good advice. Try the 02. DO try to remember that it WILL get better. You are strong and you can and WILL get through this. It WILL end. Please hang in there and use this place to vent, cry, whatever. We are here for you.

Hugs and pf wishes,

Jeannie

BTW, Has the ER given you 02 at the appropriate flow rate with a non-rebreather mask? If not, DEMAND it.

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"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Ernie Moss aka Wishbone

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Re: Losing Battles but will Win The War
Reply #3 - Sep 2^nd, 2008 at 4:02pm

Sophia, I am so sorry you are having so much pain, but as everyone has said continue to hang tough and if an all possible try to get the O2. Another idea have you searched the member directory for someone in Denmark and sent them a PM? They may not read the post or post themselves but may have some ideas or have a means to alternative treatment. Just a thought. Wishbone.

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It don't cost a nickel to be nice and by being so you might just make someone's day.&&Ernie Moss

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FramCire

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Re: Losing Battles but will Win The War
Reply #4 - Sep 2^nd, 2008 at 4:09pm

If you haven't used O2, please do.

Therer are tons of abortives..... make a list here of what you have tried and we can probably come up with some more to try.

If O2 doesn't cut it, I use Zyprexa. See if someone has a sample so oyu can try it once or twice.

Also, have you done a prednizone taper..... it used to give me a few days of needed relief.

Do not give up, list EVERYTHING you have tried here and let the family give you a bunch of suggestions.

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Losing Battles but will Win The War Reply #5 - Sep 2^nd, 2008 at 4:33pm oxygen. Potter
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Kate in Oz

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Re: Losing Battles but will Win The War
Reply #6 - Sep 2^nd, 2008 at 9:22pm

Sophia, I'm sorry to hear that you are hurting so and sorry that your boyfriend is not able to be more understanding. Have you looked at those clips from the OUCH people? I've just watched them and believe that maybe, just maybe if he watches them he might give you a bit of a break.

I agree that O2 is the way to go. If nothing else it can stop the pain from ramping up to an unbearable level and also help to keep you calm.

I wish you all the best for your neuro appointment and for dealing with the bf.

Kate

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ClusterChuck CH.com Alumnus Offline The BEAST rises again, and again, and again, and . Posts: 5394 Greenville, North Carolina Gender:	Re: Losing Battles but will Win The War Reply #7 - Sep 2^nd, 2008 at 9:43pm Sophia, let me introduce a new idea to battle the beast: OXYGEN! I hope you get some relief soon! Chuck
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George

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Re: Losing Battles but will Win The War
Reply #8 - Sep 2^nd, 2008 at 10:46pm

Sophia wrote on Sep 2^nd, 2008 at 1:53pm:

I have tried finding the mushrooms and cant locate a supplier and have gone to all the bad neighborhoods in Copenhagen I can find.

Sophia, I make no comment on the efficacy of mushrooms, but I'm sure you realize that hunting for what you need in bad neighborhoods is a terrible idea. You won't know what you're getting--and it could be something you really won't want.

I know you're desperate--but please trust me on this.

Some very wise people here have suggested that oxygen may be your best option right now. I agree.

I'm very sorry to hear that you're in pain.

Best wishes,

George

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"Whoever loveth me, loveth my hound." (Thomas More, author of "Utopia", and Chancellor of England. 1477-1535)

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Ungweliante

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Re: Losing Battles but will Win The War
Reply #9 - Sep 3^rd, 2008 at 2:21am

I understood that earlier the RC seeds worked very well for you. You could always order 50 of them or so from the UK and see if they come through. You wouldn't lose much money if they don't get through and you could always say that they are for gardening.

Other clear choices are steroids and O2, of which O2 is the long-term choice.

- Best PF wishes,
Rosa

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Sophia

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Re: Losing Battles but will Win The War
Reply #10 - Sep 3^rd, 2008 at 12:56pm

Sorry was a bad pain day and I didnt explain that I use oxygen, have tried 2 different prednisolone tapers, I have an appointment with an ENT and am seeing my regular doctor because I have a severe sinus infection (pus not mucus in the nose sorry I know it is gross) and have had several people comment on my breathing at work and at school so once that is addressed that will help. I am frustrated at a lot of things but I will WIN THIS WAR. Even if the beast beats me to my knees and makes me cry that just means he won that battle. My life is at stake. I will win. I do not know what to do with my boyfriend. He goes to appointments with me and is told how painful this is and hears me try not to scream and sees my cry. And complains about all of it. So I will ask my neurologist to explain to him one more time about this disease and if he doesnt grow up I may just blow my American top. Thanks for all the advice and I WILL follow up on it. Sophia

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Ungweliante

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Re: Losing Battles but will Win The War
Reply #11 - Sep 3^rd, 2008 at 2:05pm

Sophia...

In all honesty, this is probably not easy for your boyfriend either. He probably doesn't want to hear you screaming in pain. If I think of the people I love, I definitely wouldn't want to hear them screaming in pain, day after day.

Wouldn't it be a gesture of love towards your boyfriend to quickly go somewhere else in the beginning of an attack, if you can, so that he wouldn't have to go through with that? Or if you can keep from screaming...try to do so?

I understand that you're going through very difficult time right now. The attacks are painful, relentless and wear you down. And when you are in a lot of pain so often, it can be really difficult to think of the feelings of others. I had the same with my ex...I were in pain and thought that he should be there for me 150% every time, every day. And when he wouldn't or couldn't, I resented him. When we discussed it later, he said that it was difficult for him, because he couldn't do anything for it. The attacks were wearing him down as well, and I couldn't often see it.

We are all here for you if you need to vent or advice of any kind.

- Hoping you get better soon,
Rosa

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