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BB
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How medications affect CH hits and cycles
« on: Jan 13th, 2007, 7:27pm » |
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Hello my friends 
The more I read on the Board the more I noticed that medications seem to change the way CH "behaves". These are what people have commented:
1- Medications prolong a cycle , particularly Verapamil and Triptans
2- Medications may turn an episodic to a chronic, particularly narcotics
3- Medications seem to make the beast morph more often.
There are many here who say that once they stop all medications the cycle becomes shorter and the hits less severe.
With my Daniel, this is his first diagnosed cycle so I have no way of knowing whether medications have done anything to his CH.
I would like to ask those who had CH for several years prior to getting on medications and those who have since stopped medications to comment on whether they think medications had done anything good or bad to their CH and how their CH have changed while on/off medications.
Thank you every much.
Hugs and painfree wishes to all.
Annette
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AussieBrian
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Re: How medications affect CH hits and cycles
« Reply #1 on: Jan 13th, 2007, 8:04pm » |
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I'll take the plunge here so long as everyone accepts this is my personal opinion and in no way ever a reccommendation to others.
Like so many of us I was un/mis-diagnosed for oh so many years and tried all sorts of things - none of which worked to any extent and some that made me quite ill.
Having finally learned the name of this dread condition I was thrown to the physicians who had a merry time over the next ten years playing with their new guinea pig. Much of what I was prescribed either caused more problems that I already had or left me far less capable of dealing with the matter at hand. After a neuro tried to kill me with an overdose of ergotomines I decided to handle it myself - med free but with a very strong will.
Best decision I've made in that my cycles are now shorter, cleaner and far more predictable.
Cheaper, too.
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karma
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Re: How medications affect CH hits and cycles
« Reply #2 on: Jan 13th, 2007, 8:10pm » |
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I went from nothing for 15 years (painful but short) to Verap, pred and Zomig for one cycle(more painful and felt like shit for months) to R.C. seeds (short and only a handful of disruptive hits)
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floridian
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Re: How medications affect CH hits and cycles
« Reply #3 on: Jan 13th, 2007, 9:13pm » |
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on Jan 13th, 2007, 8:10pm, karma wrote:I went from nothing for 15 years (painful but short) to Verap, pred and Zomig for one cycle(more painful and felt like shit for months) to R.C. seeds (short and only a handful of disruptive hits)
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I believe that falls under category 4 ... Meds that really do help.
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E-Double
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Re: How medications affect CH hits and cycles
« Reply #4 on: Jan 13th, 2007, 9:17pm » |
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10 + yrs mis/unduagnosed episodic w/ spring & fall cycles lasting about 1 month and only occuring @ night.
2004 was diagnosed and been on every med that we have all dealt with.
Went chronic 2005.
Developed toxicity from lithium towards the end of '05 and detoxed by March '06.
My cycle has not broken but the hits are shorter and easier to deal with for me now that I am med free.
The one time I really HAD to use a jab of trex over the summer while lecturing, resulted in 6-7 attacks per day for 3 weeks.
It is bizarre how some seem to have little change other than relief while others find such a tremendous change.
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BB
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Re: How medications affect CH hits and cycles
« Reply #5 on: Jan 13th, 2007, 9:23pm » |
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Thanks Brian, Karma and Floridian,
To Karma, would you say that the cycles with R.C seeds are better than the ones without any meds at all ?
Compared your cycles now to the ones before starting meds and to the ones while you were detoxing to start busters, are they same ? different ? shorter ? hits less or more severe ?
Thank you very much.
Annette
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karma
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Re: How medications affect CH hits and cycles
« Reply #6 on: Jan 13th, 2007, 9:25pm » |
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Quote:| I believe that falls under category 4 ... Meds that really do help. |
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Got it growing now so I guess it falls into category 5
self perpetuating medication that really do help
BB
Better by miles. After my first go around withh conventional meds I never fooled with them again so detoxing was not an issue.
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| « Last Edit: Jan 13th, 2007, 9:27pm by karma » |
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pubgirl
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Re: How medications affect CH hits and cycles
« Reply #7 on: Jan 13th, 2007, 9:27pm » |
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on Jan 13th, 2007, 7:27pm, BB wrote:
Hello my friends
The more I read on the Board the more I noticed that medications seem to change the way CH "behaves". These are what people have commented:
1- Medications prolong a cycle , particularly Verapamil and Triptans
2- Medications may turn an episodic to a chronic, particularly narcotics
3- Medications seem to make the beast morph more often.
There are many here who say that once they stop all medications the cycle becomes shorter and the hits less severe.
With my Daniel, this is his first diagnosed cycle so I have no way of knowing whether medications have done anything to his CH.
I would like to ask those who had CH for several years prior to getting on medications and those who have since stopped medications to comment on whether they think medications had done anything good or bad to their CH and how their CH have changed while on/off medications.
Thank you every much.
Hugs and painfree wishes to all.
Annette |
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Hi Annette!
I think this is an astute summary.
We don't have much evidence yet beyond what sufferers feel but so very many are convinced.
The ONLY people I know whose condition has not escalated either in frequency or severity have not used standard prevents at all and have used abortives, sparingly and used no opiates or NSAIDs (or they are old  sorry!).
I believe that my cycles have lessened as after my first couple of cycles when I hit everything at first "twinge" with triptans as I was scared, I always hold out for as long as I possibly can on 02 alone now with triptans for emergencies, it is tough but I feel personally strongly about it, it feels right.
I hold Prednisolone as a next desperation measure. Every time I have reached desperation with a cycle, I have booked the GP appointment to get the Pred, and the cycle starts abating.
I feel even more strongly about Verap. It feels for me like a "slippery slope"
Also anecdotally, everyone I know from our Helpline and OUCH UK whose ECH condition has remained stable or actually improved has done what I do or even stayed totally drug free.
Until I hear evidence otherwise, I am sticking with this.
Wendy
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| « Last Edit: Jan 13th, 2007, 9:29pm by pubgirl » |
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BB
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Re: How medications affect CH hits and cycles
« Reply #8 on: Jan 13th, 2007, 9:27pm » |
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on Jan 13th, 2007, 9:17pm, E-Double wrote:
The one time I really HAD to use a jab of trex over the summer while lecturing, resulted in 6-7 attacks per day for 3 weeks.
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Eric,
That is incredible what you said there ! So after going med free for a while, ONE trex jab resulted in "rebound" 6-7 attacks per day for 3 weeks ??
What about Zyprexa, does that have a similar effect ?
Thanks for sharing your experience 
Annette
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AussieBrian
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Re: How medications affect CH hits and cycles
« Reply #9 on: Jan 13th, 2007, 9:27pm » |
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on Jan 13th, 2007, 9:13pm, floridian wrote:
I believe that falls under category 4 ... Meds that really do help. |
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No-one's knocking meds of any sort here, Flo, merely discussing yet another method of dealing with the beast.
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pubgirl
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Re: How medications affect CH hits and cycles
« Reply #10 on: Jan 13th, 2007, 9:43pm » |
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on Jan 13th, 2007, 9:13pm, floridian wrote:
I believe that falls under category 4 ... Meds that really do help. |
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Annette
Could you clarify if by "meds" you mean prescription drugs or ALL treatments.
I saw seeds/mushrooms etc as "treatments" not "meds"???
W
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Re: How medications affect CH hits and cycles
« Reply #11 on: Jan 13th, 2007, 9:49pm » |
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There are many people here who do very well on the standard meds such as Jonny, Guiseppi and Chopmyheadoff.
The standard meds have given them their lives back with minimal side effects. There is no reason why they should change.
However, there seems to be more CHers who respond poorly to medications and please correct me if I am wrong, who get worse going gungho with various meds in the search of the magic bullet.
This insight might be of help to those getting frustrated with medications that dont work and to the medical profession to learn to take a step back and look at the patient/situation as a whole rather than jumping at trying the next medication ?
What do you think ?
Annette
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Re: How medications affect CH hits and cycles
« Reply #12 on: Jan 13th, 2007, 9:54pm » |
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Hello Wendy,
Thanks for helping to clarify, by medication I mean prescription medication.
I guess the one exception to this would be oxygen. Oxygen is prescribed but its not manufactured by man and as far as we know does no harm to a CHer.
Hugs
Annette
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kcopelin
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Re: How medications affect CH hits and cycles
« Reply #13 on: Jan 13th, 2007, 10:49pm » |
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Annette,
An interesting question. I told the last neurologist that I saw that I believed we should either up my dose of verap or stop it all together. Showed him my research. Explained that I believe the verap is lengthening my cycle and may have caused going chronic. He not only refused to look at the studies I brought him (and a handful of OUCH pamplets  ) but said there was no way verap could extend a cycle. Like he has ever treated a CHer before-he was a resident. Hey, he could have been one of the next generation of medical folks who could come up with something. Unfortunately, here in the United States anyway, medical school seems to suck compassion out of some people-same as studying the law. He had already worn the aegis of "Doctorhood" and wasn't listening to me at all.
I appreciate any medical doctor who is willing to listen to people and give good objective feedback.
Thank you.
Will be interested in seeing some of the other answers to this.
PFDAN'S y'all
kathy
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floridian
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Re: How medications affect CH hits and cycles
« Reply #14 on: Jan 13th, 2007, 11:49pm » |
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on Jan 13th, 2007, 9:43pm, pubgirl wrote:
Annette
Could you clarify if by "meds" you mean prescription drugs or ALL treatments.
I saw seeds/mushrooms etc as "treatments" not "meds"???
W
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A matter of semantics? Is a histamine drip a medicine or treatment? Yes!
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AussieBrian
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Re: How medications affect CH hits and cycles
« Reply #15 on: Jan 14th, 2007, 12:21am » |
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on Jan 13th, 2007, 11:49pm, floridian wrote:
It's been spelled out fairly clearly from the beginning, Flo, that this is about those of us who choose to attack the beast med-free. A lady is asking honest questions seeking honest answers.
It's got nothing to do with the rightness or wrongidity of any medication, nor its morality or legalness.
I've personally long wished to see such a discussion, but will never-ever take away from those who gain any relief from whatever medication they choose to use - up to and including the famous Frozen Banana cure.
There's no right-and-wrong here, Flo, merely a gathering of consenting adults who freely choose to discuss dragon-slaying sans drugs.
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George_J
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Re: How medications affect CH hits and cycles
« Reply #16 on: Jan 14th, 2007, 12:49am » |
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With the caveat that this is not a recommendation to anyone else, and is only my own experience:
During the first ten years that I had CH, I was prescribed most of the medications that were used for CH at that time, at one time or another--Sansert, caffergot, Periactin, and a number of different pain medications, including narcotics. The pain medications were completely unhelpful. While taking Sansert along with pain medications, the number of hits increased to several a day (I normally only get one). The cycles themselves did not seem to last any longer, however. Caffergot seemed to do very little, and Periactin was completely ineffective--I may as well have been popping smarties.
I decided, in the mid-seventies, to quit taking prescription meds for CH, since they seemed to do little or nothing, and some made them actively worse. I haven't changed my approach too much since then, although I now take melatonin in cycle, and supplement with magnesium and calcium in and out of cycle. Nothing I've heard since about newer prescription medications that are prescribed for CH changed my mind--the side effects vis a vis the dubious benefits did not seem a good trade-off.
Throughout, my cycles have been predictable, and seasonal. They've gotten farther and farther apart as I've gotten older, although the intensity has not lessened.
I'm episodic, and have always been episodic. If I had been chronic, I may well have made other decisions.
Best wishes,
George
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pubgirl
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Re: How medications affect CH hits and cycles
« Reply #17 on: Jan 14th, 2007, 5:19am » |
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on Jan 14th, 2007, 12:49am, georgej wrote:
I'm episodic, and have always been episodic. If I had been chronic, I may well have made other decisions.
Best wishes,
George
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The $6 million question George is if you had made other decisions, would you be chronic or are we all pre-programmed as some believe?!
I would love to know the answer to that one!
W
Floridian
I was just concerned that I knew what the question was that Annette was asking or the answers don't mean much.
Yes, it is "semantics" but as you well know, the semantics of a question will bias the answers. I am not suggesting prescription drugs or treatments are any better or worse than non-prescription drugs or treatments but the question was appearing to me to only include prescription medications and I wanted to clarify that.
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| « Last Edit: Jan 14th, 2007, 5:24am by pubgirl » |
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E-Double
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Re: How medications affect CH hits and cycles
« Reply #18 on: Jan 14th, 2007, 7:53am » |
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I'm with Brian as far as "US" being consenting adults...  sounds perverse
Anyway,
I will always advocate for "US" to find a way to be PF by any means necessary excluding ONE METHOD.
I will always try to provide some sort of advice that is as empirically validated as can be with the limited studies that are out there for CH (I do not mean quantity for there are plenty of studies but they all lack follow up in many a way due to the nature of the disorder)
I can not say that I am 100% certain that I will never take meds regularly again ut after 10 months of being clean I am pretty close to that.
It hurts like no other pain that I have ever felt with exception to the mental pain and heartache of finding a friend of yours dead in your living room in college.
Back to meds.........
Zyprexa has never appeared to "morph" the attacks or leave me with anything unwanted.
I have only been PF from it YET I still do not take this and like the trex, I have only used it a handful of times since.
I really try damn hard not to cave even when it means having to pull over while driving like last night and having my wife (who was in a seperate car) pull over and jump out to make sure I am ok. It can be demeaning but it passes.
If I have my Oxygen 97% of the time it will be used or I will just be a stubborn SOB the other 2% while caving less than 1%.
It is your own body and the decission of yours and your loved one who support you.
My 2 sheckles
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pubgirl
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Re: How medications affect CH hits and cycles
« Reply #19 on: Jan 14th, 2007, 9:39am » |
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on Jan 13th, 2007, 9:49pm, BB wrote:
This insight might be of help to those getting frustrated with medications that dont work and to the medical profession to learn to take a step back and look at the patient/situation as a whole rather than jumping at trying the next medication ?
What do you think ?
Annette |
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I think there is a helluva lot in this Annette.
Since CH has become better known, we have seen a lot of new people whose drug regimes have ramped alarmingly even in the first year of treatment right through to being sequentially given ALL the main prevents to "try" in addition to the abortives.
When faced with someone in real distress (maybe new to CH and scared witless at the pain levels) doctors often do throw increasing levels of drugs at them in the hope that "something works". This doesn't make them bad doctors, often the contrary- they are trying to help.
It would take a VERY brave GP or neuro to suggest that the new sufferer take nothing! They just wouldn't do it I don't think.
This is why Boards and regular threads like this are REALLY important, so people can see that there may be a better (or alternative! ) route they can choose for themselves.
We "suggest" to callers to our Helpline that there is increasing evidence (but we do say only a little actual proof) that minimising their prescription drug intake may be a benefit in the long run if they are able to cope with the "now".
02 is always the first abortive to be mentioned and we spend a long time discussing the pro's and con's of prevents.
I don't think most doctors do this, or even know it.
So it matters HUGELY that we do. Shall get off my soapbox now but I am reminded daily how vital boards like this are.
W
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floridian
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Re: How medications affect CH hits and cycles
« Reply #20 on: Jan 14th, 2007, 10:08am » |
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on Jan 13th, 2007, 9:27pm, AussieBrian wrote:
No-one's knocking meds of any sort here, Flo, merely discussing yet another method of dealing with the beast.
Flo, that this is about those of us who choose to attack the beast med-free. A lady is asking honest questions seeking honest answers.
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I'm not knocking anything or suggesting that anyone is knocking anything. The original question dealt with concerns that meds can extend cycles - and I think some meds can do that in some people.
But I think there are some meds that do not extend cycles, and discussing only three categories of meds (that prolong a cycle, turn episodic to chronic, or otherwise morph the beast) is a limited way to look at the world of medicines.
This post is not only about "those who choose to attack the beast med-free" as you suggested. In the original post that started this thread, Anette said "I would like to ask those who had CH for several years prior to getting on medications and those who have since stopped medications to comment on whether they think medications had done anything good or bad to their CH and how their CH have changed while on/off medications. " My comments have all been within a framework of that original post.
Nor am I concerned with issues of whether a med or non-med treatment is 'right' or 'wrong', legal or illegal, etc. If people want to go one route or the other, that's their decision - individuals should have freedom, and the pros and cons should be discussed so that decisions are better informed. Agree with you fully on that.
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Wendy - just trying to clarify. Your right, semantics are more than words - it includes words and meanings, how people structure their thinking.
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| « Last Edit: Jan 14th, 2007, 10:26am by floridian » |
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pubgirl
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Re: How medications affect CH hits and cycles
« Reply #21 on: Jan 14th, 2007, 10:41am » |
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on Jan 14th, 2007, 10:08am, floridian wrote:
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Wendy - just trying to clarify. Your right, semantics are more than words - it includes words and meanings, how people structure their thinking. |
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Jonathan
Agreed entirely!
but: this is obviously a subject people need to talk about and need to know what others think/have experienced.
and: Annette's was centred around prescription/conventional drugs and 3 responses to these which is what has caused your concern but is what she wanted to know/was interested in.
and: As it is SO difficult to phrase a question so that it does not exclude, suggest or possibly even require a particular answer (usually takes an expert to do it)...
Suggestion: Why don't you phrase an open question running alongside Annette's to gain information. We could ask DJ to lock it at the top somewhere?
There has to be value in it surely?
W
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| « Last Edit: Jan 14th, 2007, 10:44am by pubgirl » |
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Re: How medications affect CH hits and cycles
« Reply #22 on: Jan 14th, 2007, 11:21am » |
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Thank you very much everyone who have replied.
Kathy,
I am sorry to hear that your neuro refused to listen to you. Unfortunately most specialists are like that. They even refuse to listen to GPs let alone patients  . So what did you do in the end? Did you increase the Verap or stop it completely and what was your experience with/without it please?
George,
Its interesting that the medications you were prescribed in the 70s are still being prescribed in Australia today as mainstream meds for CH. Ergotamine, Sansert ( known as Deseril in Australia ) and Periactin were initially prescribed to Daniel by the first neurologist we saw! Its also interesting that Sansert is banned in several country due to its side effects yet its still being prescribed in Australia and Canada.
Wendy,
Its so true that once the diagnosis of CH is made, both doctors and patients hope like hell that this or that medication is going to stop all the hits. Unfortunately, from our own experience and from talking to many other CHers, its never that simple. Its usually a matter of trials and errors, try this if it doesnt work then try that ... Soon the patient turns into a guinea pig and a walking pharmacy !
It would be a lot better if doctors prescribe oxygen as the first line of treatment then spend a lot more time discussing/explaining to patients the pros and cons ( including making CH worse ) of other available medications. Too often these days doctors explain nothing and just hand over a script saying " try this, if it doesnt work come back and get something else to try".
There doesnt seem to be any study looking at the effects of various medications on CH cycles/patterns themselves. There are only a few studies that show overuse of meds can cause rebound headaches. I dont think the neurologists are aware that certain meds may actually prolong a cycle or turn the patient chronic.
Annette
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Re: How medications affect CH hits and cycles
« Reply #23 on: Jan 14th, 2007, 11:41am » |
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Floridian,
I agree with you totally that there are meds that work well and dont prolong a cycle. However, that depends more on the persons response rather than the therapeutic effects of the medication itself.
For example, to Kathy and several others, verapamil seems to prolong their cycles. Yet to Chopmyheadoff and Jonny, it blocked most of their hits. To E Double, too much triptans bring bad news yet Svenn can use up to 8 shots a day without much problem. One thing I have learnt from here is that different people react to the same medication differently.
My main point is, its very important for both doctors and patients to be fully informed of what the medications can do to them, not just in the form of known side effects but in the bigger picture of how they positively or negatively affect the whole person/condition itself.
Annette
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pubgirl
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Re: How medications affect CH hits and cycles
« Reply #24 on: Jan 14th, 2007, 12:01pm » |
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on Jan 14th, 2007, 11:21am, BB wrote:
Thank you very much everyone who have replied.
Wendy,
Its so true that once the diagnosis of CH is made, both doctors and patients hope like hell that this or that medication is going to stop all the hits. Unfortunately, from our own experience and from talking to many other CHers, its never that simple. Its usually a matter of trials and errors, try this if it doesnt work then try that ... Soon the patient turns into a guinea pig and a walking pharmacy !
Annette |
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I think that is the key for new people "stop all the hits".
That is what they think they need because they are scared of the pain. It is also what the doctors are trying to do for them as they know no better and someone told them that prevents "prevent" (should have a new name like "might prevents for a while"
The Holy Grail/magic bullet that "stops all the hits" doesn't exist yet.
and it ISN'T going to go happen for ever via drugs or any "treatment"
So trying every single drug in rapid succession is not the answer.
Buggered if I know what is, but I know what isn't!
W
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test rss