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Christine Karper

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Posts posted by Christine Karper

  1. I sure hope someone is able to help.

    I have been CH free since august 2010 and started  headaches three days ago.  Dosing was such a big help to me in 2010.  I would love to try dosing again.  How do I get a hold of more to dose again?  I am not sure if my two year respite was due to the dosing but I am ready to try again.  Please call me-mail or e-mail

    Chris Karper

    7949 sloop place #101

    Orlando FL 32825

    407-256-8535

    ckarper@yahoo.com

  2. Chris, did you have the trial ONS removed June 10th as planned?  If yes, that is only 4 days.  I wouldn't expect seeds or mushrooms to work within that time period.  They are medicine and like any medicine they take some time to give results.

    As you know, my husband is chronic like you.  He hasn't tried the seeds, but if you have been reading my post "Success with Mushies"  you can see that it took some time and things did get worse before they got better.  I posted a recap last week.

    I am so glad you are going to give alt meds a chance before the permanent implant.  But do give it a chance before giving up.  Another important thing is that you detox from your current meds.  I know it is hard, but it is important.

    Wishing you the best of luck.

    Lee Ann

    Yes- Lee Ann,

    I did have the ONS removed on the 11th.  I experienced headaches again that evening- after having three days of complete relief.  I wonder if just having the leads inserted into the occipital nerve was enough to block the pain message being sent.  I really did have tremendous relief when the ONS was in.  I am still going to try the alt meds. Will keep you posted.

    Ck

  3. Hi Matty,

    I followed the instructions I found on this site for the RC seeds.  I started with 25-crushed 'em and soaked in water for 2 hours.  Nothing happened.  I uped the count to 40 seeds soaked overnight- still nada- headaches every 3 hours.

    I finally went to 60 seeds soaked overnight- nothing- headaches still a 10Kip.

    I still have two vials of seeds- 50 in each- any suggestions on how to do things differently?

    Chris

  4. Thanks for all the feedback.  One thing I feel compelled to clarify- this procedure is not permanant- it can be removed if it is not working.

    I had so much success with the temporary- I was stunned! For the first time in 10 years I was able to get through a day without a headache- what a life changing event for me!

    I have tried the RC seeds with no relief- amm waiting on the mushrooms to try these prior to the permanant implant (Misleading term).  If I have success with the mushrooms, I will absolutely delay the surgery- but what is worse- the ONSi which for me was minnimally invasive- even the trial- or continual mushrooms which may or may not provide the same relief-  I will give it a try and see how it goes-  Also, keeping in mind that if ever the psyolsibin (sp) gets medically approved- I can still have the ONS removed and go that route.  The surgery is really not as bad as some may think, but I do understand those with reservations.

    Just think of how many people are walking around with pacemakers- it is a very similar- yet less invasive procedure.

    For a chronic- I would give my hands for this pain to stop.

    Will keep you all posted on how the trial with mushrooms go- maybe it will change my mind.

    Thanks all,

    ~Chris

  5. Can't keep the trial more than ten days- not sure why.

    Still having great success-  after years of being chronic- this is a blessing!

    I am scheduled to have the permanant placement on July 7th.

    I vote for yes for anyone considering this procedure!

    Ck :)

  6. Hello All,

    THe ONS is working very well for me. I have had 6 headaches that were all aborted within 20 minutes- and the pain never got past a 6.  I have had 2 that woke me from a sleep that were pretty bad- but were under control within 1/2 hour and the pain decreased rapidly- from 10 to 5.

    I have noticed also that my regularly scheduled headaches are no longer coming on-

    I am scheduled to have the trial removed on June 10th- sadly- but will be planning the permanant implant asap- hopefully within a week of the trial removal.

    I will keep you posted.

    Ck :D

  7. It's June 3rd and have had the ONS for 1 day-  so far it has helped me with 3 headaches. Stopped one entirely and brought the other two down to a 6 from 10+

    I have not had to use imitrex due to the fact the ONS is working to reduce the pain.  It is not a cure all- and of course it has only been 1 day for me but so far- it seems to be helping.

    Will keep you all posted.

    ~Chris

  8. No own experience, but looking at the literature ivDHE does seem to have a better efficiacy than Methysergide:

    about DHE...I have had the IV treatment- a form of Methysergide...had to be in hospital 4 days for the treatment. I was headache free the entire time I had the IV, but two days after the conclusion of the IV therapy- the daily headaches returned.

    Also is available in prescription nasal spray- Migranal...not as effective but when take 3x a day- it prevented my daily attacks.  The main ingredient is ergotamine- can be hard on the heart!  So...it is not a long term solution- may be able to break a cycle- I am chronic andit did not break the cycle- just gave me a few days of relief.

    Ck

  9. Hi Tony,

    You asked...Anyone else ever get this or have been told this.

    1. they will go away as you get older and you will possibly hav them occassionaly

    2. you will outgrow them

    3. you will become chronic - i was also told this once as well.

    4. did they become more hard to predict as you got older?

    Yes- I was told all of this...what came true for me- I went chronic after 15 years of being episodic. My episodes were 6 months ha's then 11 months no ha's.  Finally turned chronic and they have been unrelenting for 6 years- I am about to have the ONS procedure to see if it will help-- I am becoming refractory to all meds.

    Chris

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