13 Responses to No more meds »»

Comments

1. Beth
   Comment by Beth | 2007/06/02 at 07:51:25

   Is there anything else you can do when you get the headaches? Does anything like cold packs help?

   Keep on blogging. People are finding this a useful site.

2. gina
   Comment by gina | 2007/06/02 at 17:52:01

   Hello Beth,
   I havent figured out how to respond to a comment yet, so I will respond with a comment. Nothing works for these headaches. No cold packs or hot packs or Motrin nothing works. Only that medicine. So few people have these headaches that it is hard for DR’s to find remedies for them. take care,

   gina

3. Joanne
   Comment by Joanne | 2007/06/11 at 18:47:08

   Gina–
   i’d love to talk with you more about cph. i’ve had it now chronically for a year and have been looking for some chat/support group about this! it’s been sooo difficult, and i don’t know anyone else who has this. i can’t tolerate the indomethacin that is supposed to be The Cure for this (it gives me a whopping overall headache and such woozy, sick feeling even at very low dose that, like you, i can’t take it. Is that the medicine you tried?? can we trade more info about our experiences? for now, i’ll tell you i’m having some (tentatively very hopeful) help from some intense acupuncture regime. Joanne

4. Beth
   Comment by Beth | 2007/06/12 at 18:30:03

   Gina, When I searched on Chronic Paroxysmal Hemicrania to find out more, your blog showed up at the top of page 2. Good going. You can help people cope with their own CPH by blogging.

5. gina
   Comment by gina | 2007/06/12 at 21:34:42

   Thanks Beth for the encouragement and the interest! Thank you to Joanne for responding. We can relate to eachother and help eachother out!

6. jackie
   Comment by jackie | 2007/09/08 at 16:13:21

   I looked up CPH support groups and found my way to your blog. I’ve had CPH for over two and a half years. I’ve tried dozens of medications and indomethacin nearly killed me. I went on neurontin last spring and went into a quasi-remission, but have recently returned to full blown headaches which occur for almost 16 hours every day. I would really like to talk with others with CPH because, honestly, I’ve felt very alone in the world. My co-workers, children, and husband are all sick of hearing that I “have a headache.” No one really understands what it is like to be under a “life sentence.”

7. Jann
   Comment by Jann | 2007/10/17 at 16:44:03

   Hello,

   Recently our 15yo son was diagnosed with CPH. His headaches started in January this year and he was getting up to 10 a day before our Neurologist diagnosed him with CPH and prescribed Indocid. The response was spectacular, with this headaches stopping within 3 days. We’ve been able to reduce his dosage to 2 x 25mg a day, however worry about the side effects of long-term use of Indocid.

   We are taking all the precautions we can, making sure he has a glass of milk before taking the tablet and also taking it with food. We initially thought he had Cluster Headaches, and there is a range of support websites for these headaches, but your posts are the first I’ve found in relation to CPH. Has anyone found any websites dedicated to CPH support?

   Take care and hope you are all headache free soon.

8. Karen
   Comment by Karen | 2007/10/24 at 12:13:55

   CPH, Chronic Paroxysmal Hemicrania, a painfull illness and a lonely one. I am so relieved to find this site. I was diagnosed in 6/06 and have been successfully treated with a combination of indomethecin and verapamil. When taken independently, neither was strong enough to overcome the symptoms. Together, I had been symptom free for the worst part of the illness. There is a residual feeling so “something amiss” in the area of the problem that does not go away with the medication, but it poses no essential problem. As of this writing, 16 months later. There is the barest evidence that the symptoms are slowly recurring. Time will tell.

   The side effects are quite evident, particularily periodic dizziness, but are preferable to the dramatic and completely overwhelming, repetitive pain- that is even more disruptive to my life. I also have been diagnosed with fibromyalgia, and the pain of the headaches causes tenseness in the muscles, creating a fibro episode, so it is fair to say I am a 5 foot 7 owie. When faced with driving long distances- I do not take my medication and find symptoms will start to reoccur 2-3 days later. But, I can think clearly when need be. And “timing is everything”

   Another, a bit indelicate, side effect of the verapomil is constipation. It helps to take tons of water, increase the fiber in your diet and exercise, perhaps low impact exercises- to keep the plumbing in order.

   By profession, I am a journalist. It has been very frustrating to try and do research on my own illness, get feedback, (or not?) and try to have a noggin clear enough to not leave my participles… or anything else… dangling.
   … it’s also extremly difficult to go job hunting.

   Trying to date has been interesting. Those of you who may see this may be able to associate with trying to “get a life” while having a very painful illness. It was prior to the correct diagnosis of CPH, so I really didn’t know what was going on. My Dr. at that time told me it was “stress”. I decided to get “de-”stressed and risk going out on a first date to a swanky resteraunt, I was hit with a horrible CPH episode. I had tried to time the date so that would not happen… didn’t work… I could feel it creeping on.. One eye had mascara all over it as it watered… and I really wanted to take the dinner napkin and stuff it in that one nostril that kept running.. but decided against it, the napkin did’t go with the dress I paid for with half a weekly paycheck. It hit full on, while we sat at the center table. The poor guy ran accross the street to the drug store, bought all kinds of pain remedies, a hot pack, a cold pack, nose drops and probably would have kicked in for an accupuncturist if one was available… (I had tried that too,for 4 months with no success).. he sat with me in the car for an hour, as I was unable to drive home. Funny, I never heard from him again, and have since decided to move to Tibet and milk goats or something rather than have a social life. Match.Com won’t be making any more money off of me… E’nuff o me…

   Jan, I have only found one headache support site that mentioned cph, but I would not recommend it. As with most sites, cluster headaches the larger populace can associate with, not CPH, which is indefinately more rare. His dose is very low and as indomethecin was created in the 1960’s and has been used ever since, it seems as if there was a problem it would have been noted by now. And who knows? Perhaps they will come up with something else one day.

   CPH is a nasty lil thing. As with other forms of chronic pain, I hope you can find humor amid the tears. It is difficult to focus outward when you hurt inward- but a positive psycological attitude is more effective than the strongest pain pill.

   Hugs to you all.

9. Kristen Leedy
   Comment by Kristen Leedy | 2007/11/06 at 21:32:34

   Hi there… I have suffered from CPH for 15 yrs. I have taken Indomethican now for 7 yrs. I am also taking Diluadid for break thought pain. I am the only person that I know with this curse. I would like to meet other people to help me understand more about this. I was diangosed at the Cleveland Clinic, 7 yrs. ago. Like most of you, I have been mis diangosed and have taken everything under the sun. My pain 15 yrs. ago started in my jaw and 15 yrs, later it is on the right side of my head in my neck, right shoulder blade and now all the way down my back. My pain does run in cycles. Season changes seem to bed the worst for me. I just could keep on going on and on. If you are interested please reply. God Bless to you all.

   Kristen

10. Mabel
    Comment by Mabel | 2007/11/19 at 18:42:18

    I came upon your blog when I searched for paroxysmal hemicrania. Just today, I finally found a medical name for what I’ve been experiencing for 16 years on and off. Mine is episodic and not chronic. I’ve described my headache to my doctor in the past but they always say it’s just a stress headache. I called my headache the “zapping headache” because it feels like an electric shock to my head. Just wanted to let you know that you’re not alone.

11. Kris
    Comment by Kris | 2007/12/02 at 08:12:04

    Hi, I just wanted to tell you that I have CPH too and that I absolutely understand how horrific it is… For me the indomethacin stopped working and all other options had been tried, so I underwent surgery to have a deep brain stimulator implanted in November last year. After a few adjustments I am now pain free! If you or anyone else wants to know anything about the experience, I can be emailed at: jkrischicago@yahoo.com.

    The only reason I had the surgery was because there was no other option. I was so worn down by the pain and felt so trapped… The surgery was scary to contemplate, but ultimately I knew that I had to give it a try. CPH ruined my life and the implant has restored me to a life of hope and normalcy although I am still picking up the pieces.

    God bless and take care,
    Kris

12. Melissa
    Comment by Melissa | 2008/02/15 at 11:03:17

    Hello - I see that all of the responses are here from December or earlier, but I wanted to send a reply anyway! I also have CPH, for about 4 years now?? I think starting a support group would be great, because before I read this blog a while ago, I thought I was the only one with CPH! I did the indomethacin for a while, but the neurologist was afraid of me being on a pain killer my entire life. So I switched to neurontin, which did wonders for a while! Unfortunately, the 300 mg isn’t working too well anymore. I’d be interested to know other people’s meds that they use and their success/side effects with it. Also - what is this surgery?? I’d be interested in hearing about this as well.

    Another question - I did have a serious head injury years ago - cracked my head open, lots of stitches, concussion, etc. I always thought perhaps this played a role in my CPH, especially wonder that since no doctors seem to have any answers! Anyone else have a head trauma?

13. Melody
    Comment by Melody | 2008/09/05 at 23:14:37

    I guess I am lucky…I have only been on the meds…Indomethacin…for two days…I was finally diagnosed with CPH on Wednesday and today it is Friday…I do not get the tired feeling, but…I do get some diareha…That part sucks, but the pharmacist said that once the body gets used to the drug that “May” pass…

    I never had head trauma…In fact the first episode or “hit” as my husband and I call it came in September 1991…I only remember because I had just gone back to work after my maternity leave was over…I had been back about 2 weeks and “BAMMM” I was hit by a truck…Or so it felt…I was driving in to work and nearly got into a wreck from the severity of the “hit”…I went to work and had a couple more “hits” that night at work…I went to a neurologist about 2 weeks later because the “hits” were becoming constant…They gave me a MRI scan, put me on a seriously strong drug (can’t remember what) and damned near killed me…(literally, I had to have my stomach pumped…not a pleasant thing let me tell you)…Hence, I wrote off dealing with it medically…I dealt with it for 16+ years until finally while driving on I-5 with my husband I had a “hit”…he got really peaved off and told me, not asked me, to go to the doctor…He did not care what I thought anymore…

    I went to my general practitioner and he refered me to a neurologist…I told my GP that there was no way I was going to Dr. ***** (I can’t say his name), the quack, and he said that was fine there was finally a new and highly sought after neurologist in town…I went and he was nearly excited when he knew what I had after only a couple of minutes…My MRI is next week, but he was 100% sure…I think he hit the nail on the head because it has been 36 hours since I had a “hit” and that is a record…17 years, and this is the first time EVER that I have not had a “hit”…

    I am sorry about your discomfort…I guess I am lucky…I have cronic not seasonal and I am only having to take 75mg in the morning and 75 mg in the evening…I am not tired or sick…I am happy…

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