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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › This is so new to me... Help!

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This is so new to me... Help! (Read 5516 times)

piglet6

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Re: This is so new to me... Help!
Reply #25 - Oct 17^th, 2008 at 6:57am

Thank you everyone for your good advice. I really appreciate it. I know that I really need to research this before I make any decisions that involve invasively entering my brain.

I am having a good morning so I guess I am looking at the sunnier side. No clusters last night. I slept 1/2way decent despite a tough past few days. The MRI/MRA went well. I will get the results next week as I am leaving town for a few days and won't be able to see my doctor.

MRI was tough. The noise level was excruitating. They did their best to muffle the sounds. I grabbed my wristed with my other hand and laid as still as I could and just silently prayed. I must have grabbed my wrist so hard b/c my best friend inquired what happened to my wrist when I came out. LOL! Looked like I had been tied down. LOL! Don't like those small tight spaces with loud loud noises around my head.

Here is a question.... I am on Toprol 25mg (take at bedtime) , Topamax 100mg (take in 50 mg doses 2x a day) , Butalbital (abortive- use approx 3-4 x day), Maxalt (abortive- currently using 1-2 times per day), also taking Trazadone for CF. I have recently become extremely dizzy and nauseous. I have virtually NO appetiete. I am having stomach and intestinal issues and have pretty much reduced myself to a diet of crackers and other bland foods. The smell of chocolate causes instant CH. Most food makes me extremely sick to my stomach. Are these common side effects? Do I need to be concerned? Should I call my doctor or just tell her next Wednesday?

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: This is so new to me... Help! Reply #26 - Oct 20^th, 2008 at 2:33am Bump for meds questions. I don't have the answers. If you don't get a response here you might try asking again on the Meds and Treatments page. Sorry I don't have answers, but someone will. Jerry
Back to top	"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown) IP Logged

DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: This is so new to me... Help! Reply #27 - Oct 21^st, 2008 at 12:29pm Hi, I don't have any experience with the meds you are taking but I have a general piece of advice. If you ever find youself asking if you should call your Dr. Just do it. Any sudden change or worsening in symptoms should be discussed with your Dr. Good luck... -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Davo-nz

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Re: This is so new to me... Help!
Reply #28 - Oct 30^th, 2008 at 6:30pm

Hi Amy,

I've just rejoined this website after a few years away .. I was actually booked in to have the surgery about 4 years ago during my last CH cycle but at that stage but my older brother Gary was also a chronic CH and he was into his 18th year with virtually no remission during that time .. so he decided to have the nerve surgery .. his clusters returned 8 days afterwards and he lost most of the feeling in the left side of his face and his left eye was also badly affected .. my surgery was still about 4 months off so I cancelled it .. think very carefully before going ahead with this .. please ! In case you're wondering how my brother is now .. well unfortunately he passed away during a CH attack about 3 months after that surgery .. he suffered a heart attack.

All I can really say is hang in there Amy .. all of us know what you are feeling and what you have to go through on a daily basis. Hey about the oxygen, I don't know if you can just go and rent Oxy bottles there where you live but here in New Zealand I just went to an industrial gas bottling place and they've rented me a C 02 bottle with mask etc .. it's not that expensive either .. so if your doc won't come to the party it might well be worth checking out ?

good luck, Dave

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Linda_Howell

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Re: This is so new to me... Help!
Reply #29 - Oct 30^th, 2008 at 6:48pm

Amy, I'd never heard of Butalbital so I looked it up.

Quote:

Dizziness
Drowsiness
Intoxicated feeling
Light-headedness
Nausea
Sedation
Euphoria
Addiction
Severe impairment of judgement
Diarrhea

Fioricet (50/40/325)

There are other potential side effects; this list should not be considered all-inclusive.

[edit] Dangers and Risks
Butalbital is a physically and psychologically addictive barbiturate. Butalbital should not be mixed with alcohol due to increased risk of intoxication, increased respiratory depression, and increased liver toxicity when it is a butalbital combination including paracetamol.

Besides the other meds they have you on this just MAY be a part of the symptoms you are experiencing. Call that Dr. ASAP if you cannot eat....that is not a good thing.

Hurt people.....hurt people. Think about it.

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Callico

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Re: This is so new to me... Help!
Reply #30 - Oct 30^th, 2008 at 11:30pm

Amy,

Butalbital is the first thing my Dr put me on back when I was first diagnosed almost 30 yrs ago. Nobody knew anything much about CH around there, and he was just trying to kill pain. It didn't work! All I got was high. I still hurt, just didn't care (about anything), then I got dependent, and had to take myself off. That was ROUGH. Did it on my own, and went med free for a number of years till I found this place and found some alternatives. My suggestion for what it is worth is to get as far away from any narcotics (or synthetics) as you can. They really don't address CH pain, and are way to slow acting to do any good anyway.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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Skyhawk5

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Re: This is so new to me... Help!
Reply #31 - Nov 1^st, 2008 at 2:09pm

Piglet, Please try and get the Oxygen for home use. Sugery is a LAST RESORT. Oxygen (O2) for 70% of us will abort up to 90% of ch attacks in minutes when used properly. Minumum 10-15lpm through a NON-REBREATHER mask, the nose canula is worthless,

I know you are desparate but please get the O2 and you just may find some needed hope.

Best, Don

« Last Edit: Nov 2^nd, 2008 at 10:04pm by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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BarbaraD

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Re: This is so new to me... Help!
Reply #32 - Nov 2^nd, 2008 at 6:26am

Topamax will sometimes cause a loss of appetite. (In my case that was NOT a downside). I've been on it since 99 and the appetite comes back (unfortunately in my case). Take the whole dose at night if you have any side effects. This worked for me.

Maxalt makes me deathly sick to my stomach. I cannot tolerate it at all. That could explain that one. Might try something else.

Hugs BD

What don't kill ya, Makes ya stronger!

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