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Hello! This is my story (Read 1250 times)
Mr. E.
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Hello! This is my story
Aug 27th, 2014 at 8:47pm
 
Hi.  I am 55 years old and have had CH since I was 27 (but not properly diagnosed until I was 35).  I am periodic and had cycles twice a year  usually in the hot weather in Summer and coolest weather of the Winter. (I live in S. California in the Los Angeles area).  I had been pain free for 6 years and then another cycle started last week.  Bad but not as bad so far as the ones when I was younger.  Before this cycle happened I had thought I had maybe "aged out" of CH.   Been keeping the pain at bay with capscasin (Sinus Buster) at this point but realise it will probably stop working at some point.  Going to my doctor on Wednesday to see what type of treatment I should have.  I don't want something with nasty side effects if possible.  I have heard good things about D3 on here.  I also have ADHD(but am not on ADHD meds) and have heard Ritalin has worked for CH.  One of my main triggers is stress.  I have a stressful and mentally demanding job which my ADHD symptoms make difficult for me and maybe I can kill two birds with one stone?   I have been on verapamil in past cycles and it worked but I have read stuff about the damage it can do.  I also find that exercise helps.  I am really into fitness...I work out 6 days a week and at 55 am 5'6" and weigh 130 lbs.  with a 30 inch waist.  Interestingly enough I am one of the few people with CH that alcohol isn't a trigger during a cycle.  I can drink during a cycle and it doesn't trigger a headache in my case.   I have a lot of tension in my neck and upper back and am thinking about also getting a massage if it will help.  I want to be as holistic and natural as possible in my treatment for CH as so many of the CH meds seem to have dangerous side effects.  Glad I found this board.
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maz
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Re: Hello! This is my story
Reply #1 - Aug 28th, 2014 at 4:52am
 
Hi, and welcome.
Yes, some of the meds do have side effects, but I honestly believe that there is nothing I can do to myself which would be worse than CH.

The most natural remedy is pure oxygen. But, this is important, You need a flow rate of at least 15 litres per minute, more is better, and a non - rebreather mask. If you get either of those wrong it won't work. But get it right and it will change your life. Often, if you get on it fast enough at the very first sign of an attack, it will turn into a non event.

Sumatriptan (I think it may be called imitrex or imigran in the USA) is the best abortive drug. It does have nasty side effects for some people, but not every one. It comes in pill form, nasal spray and auto injections. The pills and spray take too long to get into your system to be of much help, but the injections are fantastic and will abort the worst CH in a few minutes. I use them every cycle and the only effect they have on me is pure blessed relief. That said, I've used them far less since I got the oxygen. They are a good stand by for when I'm away from my 02 tanks, or when I leave it too long and the attack has ramped up. You could always try it once, and if you have bad effects you can stop. It doesn't stay in your system. But if you're OK with it , you will find the benefits of getting your life back far out weighs the risks.

Look for posts by Batch about the vitamin D3 regime. You need high doses, and there are other things that need to be taken with it. You also need to get blood tests done. Batch is a great guy and I'm sure he'll help you figure it all out if you send him a message. He's helped so many of us. Our hero.

Hope I've helped a little. Keep coming back here and you'll find more help and support than you ever thought possible. We all know what you go through.
Maz.
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feisty
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west coast, BC, Canada
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Re: Hello! This is my story
Reply #2 - Sep 3rd, 2014 at 4:51pm
 
I agree with Maz. O2 was a lifesaver for my husband but it's critical to get the right equipment.

Also, see my signature line for the Regimen that is keeping so many pain free!
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Smiley wife of 48 year old husband who suffers from episodic CH ~ Batch's Anti-Inflammatory Regimen works!
 
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Bob Johnson
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Re: Hello! This is my story
Reply #3 - Sep 4th, 2014 at 10:45am
 
It's critical for your peace of mind to understand that Federal law requires the listing of side effects. What is almost NEVER expressed here in our messages is the actual rate of occurrence. If you get to the library or drug store and read the PDR (Physicians' Desk Reference) you will see the rate is 1/2% or less and upward.

Rates are POSSIBILITIES, NOT PREDICTIONS. It's a mistake to take every listed side effect as a statement that this WILL occur for you.

Individual biology and our personal medical history is so complex that it's extremely difficult to predict what, if any, reaction you may have to any particular drug or combination of meds that you may be taking. Your single, best protection is to get from your doc/pharmacist, a list of the possibilities and then monitor yourself. Few side effects are life threatening at such speed that you can't respond to signs. Know the signs of a developing issue allows you to contact you doc for advice.

I'm troubled by the number of folks who post comments about side effects, written in such a style that it conveys that this or that side effect is always associated with XX drug. These statement are a disservice to people who have no background in medicine, to new-comers who need information and not fear.

Another self-protection: never accept such a statement which is not given along with some information about degree/frequency of occurrence. Appreciate that we are not medical profs. and confirm what you read here before taking action upon our messages.
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A message I posted about this same issue re. dogs. The message is the same......

I posted this message on a chat group for dog owners (Vizsla). The issues are the same whether we are talking about animals or humans--so a little translating of words will make it understandable. The core idea: side effects are not an absolute--yes/no--issue. We must always balance potential risk with potential benefit. I'm concerned with the tendency to present comments about medicine side effects in terms which frighten folks away from trying meds which might be of benefit.
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This question about side effects from food (allergies) or medications pops up regularly. The problem is, we don't ask the correct questions. The issues are:

1. What is the rate or chance or probability that any particular side effect will develop?

Without information it's easy to assume that the list of side effects is a statement of what will happen if the med is used. In fact, side effects are reported in human medicine/vet literature as a rate of occurrence ranging from less than one percent and ranging upward.

It's important to ask the Vet for two pieces of information: what are the side effects?; what is the rate or chance that a particular effect will occur? Without information it's impossible to make a good judgment about using or not.

2. How serious are the side effects compared to the condition for which the med is being used?

3. How important is my judgment about the risk of side effects vs. the benefit of using this med?

This is a wholly subjective judgment which no one can make for us. We make a decision about how much risk tolerance we have; what are we willing to bear.

Bottom line: A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the vet what to look for, i.e., symptoms of side effects. 
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Bob Johnson
 
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