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Topic: I take no meds! (Read 1577 times) |
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lydia
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I take no meds!
« on: Apr 3rd, 2008, 4:57pm » |
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Hey everyone,
My name is Lydia and I live in El Paso, Texas. I am 35 years old and I have been a CH sufferer for 21 years and have been diagnosed for 9 years. I am actually not a newbie, this site is how I knew what to tell my neurologist. It was 1999 and I was on my little dial up laptop and I found this site.
I have the OUCH logo tattooed on my ankle (some hall of famers may remember!)
I have been lurking around this site and all of you for a LONG time. My message is one of of hope.
My situation has changed a few times since I was really active on this message board. I divorced my husband and married a new one! Since that change I no longer have health insurance. Which means NO IMITREX. I have been through 2 cycles with no meds. In the past I have taken Topomax, Lithium and a whole host of preventitive meds to no avail.
Y'all......OXYGEN does not help me! The only abortive med that has worked so far is Imitrex injections.
So.......Now I have been taking Niacin (vitamin B3) in large doses throughout this cycle. That's it.
It can be done. I just buck up and take it like a woman! I feel the tightness settling in and I take the Niacin and just fight the devil every step of the way.
Something interesting: 3 days ago I had a HA that lasted 3 1/2 hours! Holy crap! Y'all should have seen my eye. It was drooping and wandering and all red. My poor husband. I can see the worry on his face and I know that I can't comfort him. He hurts for me and can't do a thing for me.
We are a strong group of people and I love y'all. I won't be a stranger anymore. I need y'all.
peace, love and imitrex,
Lydia
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If you can stand the pain then you can withstand anything. -Kid Rock
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Jonny
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Re: I take no meds!
« Reply #1 on: Apr 3rd, 2008, 5:01pm » |
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Its about damn time you showed back up!, I was ready to hunt you down and take back that OUCH tattoo....LOL 
Welcome home, kid! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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lydia
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Re: I take no meds!
« Reply #2 on: Apr 3rd, 2008, 5:04pm » |
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hey, hey Jonny!!! You're right........It's been too long! I've missed you! I am back. I can live without meds but I can't live without my cluster buddies!
Lydia
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If you can stand the pain then you can withstand anything. -Kid Rock
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Guiseppi
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Re: I take no meds!
« Reply #3 on: Apr 3rd, 2008, 5:09pm » |
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Pleased to meet you. My neuro put me on Niacin and magnesium several years ago. I believe one or both of them has resulted in a reduction in the frequency and the severity of my attacks. Too chicked to stop one or the other to see which is effective. 
Welcome back to the board!
Guiseppi
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LeLimey
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Re: I take no meds!
« Reply #4 on: Apr 3rd, 2008, 5:09pm » |
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Hi Lydia,
The convention is in Dallas this year, think you might be able to make it?!
Have you read much in the last few months? Have you tried Red bull or melatonin? Red Bull is bloody brilliant (Actually I don't buy red bull, I buy the el cheapo equivalents from Aldi and Lidl and so on!) If I chug a can early enough it will know a hit right out for me. Alot of people swear by melatonin too. Both are definitely worth looking into while you are without insurance.
There are programs for getting meds, have you ever considered any of those? I know the info was in one of the older OUCH newsletters so I'll have a look through and see if I can find it for you in the hope it helps.
I'm glad you found your way home, this time tie yourself to the stairs with a long rope so you don't get lost again okay?!
Helen
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kimh
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Re: I take no meds!
« Reply #6 on: Apr 3rd, 2008, 5:15pm » |
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Hey 
Glad to read this post. And glad to see you posting! Best wishes to you**** I no longer take meds either (for my own special reasons  ) and got into some knock down drag outs about it. IT IS POSSIBLE and IT DOES GO AWAY. Every time i read this kind of post i feel more empowered and not so "underdog".
Feel good and thanks for the post
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lydia
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Re: I take no meds!
« Reply #7 on: Apr 3rd, 2008, 6:00pm » |
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Thanks LeLimey and KimH!!!!
I understand KimH!
And to LeLimey,
I have heard of those programs for meds. My hubby uses PPA for his Coreg.
I feel certain I would qualify for reduced priced meds.
HOWEVER.......Like KimH I just have my own reasons for not taking meds.
I don't mind sharing them if you care to know!! I am an open book!! LOL........
Thanks, Y'all. Your support makes me feel even better to be alive
peace, love and water (and apparently red bull! I'll have to try that!)
Lydia
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If you can stand the pain then you can withstand anything. -Kid Rock
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Charlie
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Re: I take no meds!
« Reply #8 on: Apr 3rd, 2008, 10:41pm » |
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Welcome back kid and I'm sorry you're having such a crappy time. Stick around.
Remember this? I thought I'd post it again for you:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Tara Ann
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Re: I take no meds!
« Reply #9 on: Apr 3rd, 2008, 10:41pm » |
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Hi Lydia, nice to meetchya! Medfree here as well (atleast for now). Hang around will ya
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outofcommission
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Re: I take no meds!
« Reply #10 on: Apr 4th, 2008, 12:03am » |
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hi lydia
i worked though my last cycle without meds. i don't believe in them. i had the shortest cycle ever with natural methods. i'm curious about the niacin. how much do you take? is it time released?
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sandie99
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Re: I take no meds!
« Reply #11 on: Apr 4th, 2008, 3:40am » |
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Lydia,
nice to meet you!
I'm also one of those wo have decided to say no to meds for my reasons, so it's energy drink for me when the beast shows up.
Wishing lots of PF days your way,
Sanna
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BarbaraD
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Re: I take no meds!
« Reply #12 on: Apr 4th, 2008, 7:12am » |
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Yeah tell us about the niacin... I've always been afraid to take it (and I need it for vertigo) because I thought it was a vaso dialator.... You may have solved my vertigo problem as well as helping with CH....
And it's about damn time you got your rear back on the board. Jonny gets really grouchy when his kids go MIA and the rest of us have to live with him..
Anyhow welcome home....
Hugs BD
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cash5542
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Re: I take no meds!
« Reply #13 on: Apr 4th, 2008, 10:59am » |
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Another option is taurine capsules. Look on the meds boards. There have been a few recent posts. It's what is in redbull other than caffeine.
Charlotte
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lydia
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Re: I take no meds!
« Reply #14 on: Apr 4th, 2008, 12:45pm » |
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oh thank you thank you thank you everyone for all the great info and love!! I am really interested in the red bull thing. I have already bought one in anticipation of the HA that's fixin to be here!!
Niacin...... OK. My friend dates a Neurologist. YES!! was my thought when she first told me what he does for a living. I was not in this cycle at the time but the shadows were lurking so I knew it was time to pick his brain. (LOL pun!) I found myself begging him for imitrex and I hate to be like that! Hence, no meds for me. I felt like a junkie begging the pusher man for his goods! Nasty behavior!
We then began to explore other options. He called a buddy of his at Emory in Atlanta and together they came up with a Niacin regimen for me.
Niacin is kind of weird. You build up a tolerance to it over time. I started out really light.
A little background. I am a Martial Artist. I have my black belt in Taekwondo and that is what I do for a living. My hubby and I have a Taekwondo gym and we teach 150 students.
I was getting HAs after my workouts so the Neuro put me on 50 mg of niacin halfway through my workout. Then 50 mg after my workouts. That was ok for about three days! Let me tell y'all I was taking the kind that flushes your whole body.
For those of you who don't know, Niacin makes your whole body red and my skin kinda feels like I am sunburned. Totally weird feeling but tolerable.
When that dosage didn't work anymore I just started taking 100 mg before workouts, 100mg in the middle or my workout, and 100mg after!! Talk about feeling like a lobster! I was all red.
Then my HAs came on full time. I started taking more and more because I was getting HAs at night now as well. (YAY) 
I am up to 2000-3000 mg a day of the non flushing kind of Niacin. I stopped doing that two days ago because Niacin, in that dosage for an extended period of time, is really bad for the liver!
I believe the Niacin has reduced both the duration and intensity of my HAs.
I still am not taikng any for at least a week, though. My body needs to take a break from it.
SHIT........red bull time.
love y'all,
lydia
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DennisM1045
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Re: I take no meds!
« Reply #15 on: Apr 4th, 2008, 1:02pm » |
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Hi Lydia,
It's nice to meet you. Sorry to hear your relatively unarmed. Let's see what we can do to change that. First off you should check out the non-med page on OUCH.
http://www.ouch-us.org/chgeneral/nonmed.htm
This is a good collection of all the OTC things that work for some. Of course nothing works for all of us. But you know that
Did the Neuro give you any reasoning behind why he thought Niacin would help?
Anyway, welcome back. I'm glad you're home again.
-Dennis-
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seasonalboomer
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Re: I take no meds!
« Reply #16 on: Apr 4th, 2008, 2:01pm » |
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Since you're "clean" from the meds you might give Kudzu a try. It has worked for many in altering their cycles - me included for a couple cycles.
Scott
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artonio7
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Re: I take no meds!
« Reply #17 on: Apr 4th, 2008, 2:18pm » |
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Quote:Niacin, Oral
What are other names for this medicine?
Type of medicine: vitamin B3; nutritional supplement
Generic and brand names: niacin, oral; niacinamide, oral; nicotinic acid, oral; Niacin SR; Niacor; Niaspan; Slo-Niacin
What is this medicine used for?
Niacin is one of the B vitamins. Several types of niacin supplements are available. Niacin is taken by mouth to treat niacin deficiency (Pellagra). Nicotinic acid may be prescribed to help lower cholesterol and triglycerides. Niacin should not be used to treat high cholesterol without a prescription. Nicotinic acid may also improve circulation problems. Niacinamide is used as an anti-inflammatory to help treat arthritis. Niacinamide does not help lower cholesterol or treat blood circulation problems.
Niacin may be used for other conditions as determined by your healthcare provider.
What should my healthcare provider know before I take this medicine?
Before taking niacin, tell your healthcare provider if you have ever had:
an allergic reaction to any medicine
a bleeding disorder
chest pain (angina)
diabetes
gallbladder problems
gout
heart disease or a heart attack
liver or kidney disease
low blood pressure
ulcers.
Females of childbearing age: If you are pregnant or breast-feeding, do not take large dosages of niacin unless your healthcare provider approves. It is not known whether this medicine will harm an unborn baby.
How do I use it?
Take this medicine exactly as your healthcare provider prescribes. If your healthcare provider has not given you specific instructions, follow the directions that come in the medicine package. Do not take more or take it longer than prescribed. Ask your healthcare provider or pharmacist about anything you do not understand.
This medicine is available in different forms. Do not take timed-release niacin without your healthcare provider's supervision. It may cause liver damage. Do not change the type of niacin you are taking without checking first with your healthcare provider. If you have sustained-release tablets or capsules, do not break, crush, or chew them.
Take this medicine with meals to lessen stomach upset. Do not drink alcohol or hot beverages with your dose.
Follow any special diet your healthcare provider recommends to control your cholesterol level.
If you miss a dose, take it as soon as you remember unless it is almost time for the next scheduled dose. In that case, skip the missed dose and take the next one as directed. Do not take double doses. If you are not sure of what to do if you miss a dose, contact your healthcare provider.
What should I watch out for?
You may need to have blood tests regularly to see how this medicine affects you. Keep all appointments for these tests.
You may feel dizzy or faint when you get up quickly after sitting or lying down. Getting up slowly may help. Also, do not drink alcohol unless your healthcare provider approves.
This medicine may cause flushing, tingling, or a sensation of warmth when you first start taking it. These effects usually stop with continued use. Taking aspirin or ibuprofen 30 minutes before taking niacin may prevent this effect. Talk with your healthcare provider about this.
Diabetics: This medicine may affect your blood sugar level and change the amount of insulin or other diabetes medicines you may need. Talk to your healthcare provider about this.
What are the possible side effects?
Along with its needed effects, your medicine may cause some unwanted side effects. Some side effects may be very serious. Some side effects may go away as your body adjusts to the medicine. Tell your healthcare provider if you have any side effects that continue or get worse.
Serious (Report these to your healthcare provider right away): Loss of appetite, decreased urination, dark colored urine, unexplained muscle pain or weakness, irregular heartbeat, chest pain, blurred vision, yellowing of the skin or eyes.
Other: Flushing, tingling, feeling of warmth, headache, dizziness, diarrhea, nausea, vomiting.
What products might interact with this medicine?
When you take this medicine with other medicines, it can change the way this or any of the other medicines work. Nonprescription medicines, vitamins, natural remedies, and certain foods may also interact. Using these products together might cause harmful side effects. Talk to your healthcare provider if you are taking:
ACE inhibitors such as benazepril (Lotensin), captopril (Capoten), enalapril (Vasotec), fosinopril (Monopril), lisinopril (Prinivil, Zestril), quinapril (Accupril), and ramipril (Altace)
alpha blockers such as prazosin (Minipress) and doxazosin (Cardura)
angiotensin receptor II blockers such as candesartan (Atacand), eprosartan (Teveten), irbesartan (Avapro), losartan (Cozaar), olmesartan (Benicar), telmisartan (Micardis), and valsartan (Diovan)
beta blockers such as atenolol (Tenormin), acebutolol (Sectral), pindolol, metoprolol (Lopressor, Toprol XL), sotalol (Betapace), nadolol (Corgard), propranolol (Inderal), labetalol (Normodyne, Trandate), and carvedilol (Coreg)
calcium channel blockers such as nifedipine (Adalat, Procardia), isradipine (DynaCirc), felodipine (Plendil), verapamil (Calan, Isoptin), diltiazem (Cardizem), and nicardipine (Cardene)
cholesterol reducing medicines such as lovastatin (Mevacor), fluvastatin (Lescol), atorvastatin (Lipitor), pravastatin (Pravachol), rosuvastatin (Crestor), and simvastatin (Zocor)
colestipol (Colestid) and cholestyramine (Questran) (Take these medicines 4 to 6 hours before or after you take niacin.)
nitrates such as nitroglycerin (Nitro-bid, Minitran, Nitrogard, Nitrek), isosorbide dinitrate (Dilatrate-SR, Isordil), and isosorbide mononitrate (Imdur, Monoket, ISMO) other vitamins or supplements that contain niacin.
Keep a list of all your medicines (prescription, nonprescription, supplements, natural remedies, and vitamins) with you. Be sure that you tell all healthcare providers who treat you about all the products you are taking.
How should I store this medicine?
Store this medicine at room temperature. Keep the container tightly closed. Protect it from heat, high humidity, and bright light.
advisory includes selected information only and may not include all side effects of this medicine or interactions with other medicines. Ask your healthcare provider or pharmacist for more information or if you have any questions.
Ask your pharmacist for the best way to dispose of outdated medicine or medicine you have not used. Do not throw medicine in the trash.
Keep all medicines out of the reach of children.
Do not share medicines with other people.
Developed by McKesson Corporation
Published by McKesson Corporation.
Last modified: 2006-10-19
Last reviewed: 2006-03-31
This content is reviewed periodically and is subject to change as new health information becomes available. The information is intended to inform and educate and is not a replacement for medical evaluation, advice, diagnosis or treatment by a healthcare professional.
Medication Advisor 2007.4 Index
Medication Advisor 2007.4 Credits
Copyright © 2007 McKesson Corporation and/or one of its subsidiaries. All Rights Reserved.
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I found this article at this site http://www.realage.com/research_library/searchResults.aspx?link=crsfiles /ma/ma_niacin_ma.htm
with warm regards,
Tony
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| « Last Edit: Apr 4th, 2008, 2:23pm by artonio7 » |
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gizmo
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Re: I take no meds!
« Reply #18 on: Apr 4th, 2008, 2:45pm » |
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Very interesting thread.
At the moment I don't take meds as well.
Not because it was my decision but simply because the old neuro prescribed me meds I can't take / meds that showed contraindications.
And since I yet have to see the new neuro my only option so far are energy drinks.
Two days ago I had a Kip 10 for 3h.
I never would have thought that I could deal with it without any meds.
But since I simply had to I was able to ... looks like I should think about the whole thing again.
Thanks for the heads-up Lydia!
Oliver
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lydia
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Re: I take no meds!
« Reply #19 on: Apr 4th, 2008, 3:53pm » |
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RED BULL WORKS!
Also, I just contacted my friend/Neuro. He is going to formulate a pill with Niacin, Taurine and caffeine for me! Yay.....
We'll see if he actually gets around to it. I can't wait for the results if he does!
He was almost dumbfounded that I knew about Taurine and energy drinks! LOL.... More proof that we are our own advocates!!
Keep at it, y'all! This is good stuff!
peace,love and red bull!
Lydia
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If you can stand the pain then you can withstand anything. -Kid Rock
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Mybelle
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Re: I take no meds!
« Reply #20 on: Apr 4th, 2008, 11:05pm » |
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Thanks, Lydia - So good to hear that there are people here who want to do it without meds and that it can be done....My husband does it and is learning to deal with it. By the way, I found a drink called Rip It - and it is only .98 cents a can and tastes better than rockstar or redbull. It may only be in the California area...Now I have to scout around for more cans!
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Jonny
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Re: I take no meds!
« Reply #21 on: Apr 4th, 2008, 11:13pm » |
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on Apr 4th, 2008, 11:05pm, Mybelle wrote:| Thanks, Lydia - So good to hear that there are people here who want to do it without meds and that it can be done....My husband does it and is learning to deal with it. |
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What are you talking about lady, your husband does not even know what causes his pain!
If he dies of a brain tumor, it will be your fault!
Get it?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Mybelle
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Re: I take no meds!
« Reply #22 on: Apr 4th, 2008, 11:33pm » |
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I don't think brain tumors taper off in intensity or become less frequent and then disappear - I believe the opposite is true - And if you would give a person a chance - the Neurology Office is pasted on my refrigerator when the pain comes back. Don't assume such things - and if he dies of a brain tumor it's his fault - not mine!!!! and I love him more than my life - You are very hostile - I don't think you mean to be but it comes out that way.
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Jonny
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Re: I take no meds!
« Reply #23 on: Apr 4th, 2008, 11:40pm » |
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on Apr 4th, 2008, 11:33pm, Mybelle wrote:
Thats your down fall!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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