I have had increased pain as well. In addition to NDPH I have undiagnosed musculoskeletal pain for which I'm going to the Cleveland Clinic. That body pain has increased too. My neuro told me today to take it easy on the pain meds though because they may trigger the headache and make it even worse.
My pain is very different from day to day, today is a bad one but the weather change does not help me either. I must say I have never had 2 days the same
Mine has got worse to. Don't know if its stress, weather or result of a reaction to a medication I had a couple of weeks ago
I think there is a post further down, and the seems to be a big coeincence when 'we' we're sick with either a cold or flu the bang the all dreaded NDPH started, all tho this is has not been the cases with everyone, just seems strange.. There was even a paper published in 2005, which I have put up on the wall.
Jessica. I have beeen on verp at 480 a day for ever but now it seems if I take it it brings it on immedetly. I took my third pill of the day yesterday and 15 mins later a kip9 oh and I was at work so that made it even better. Think I'm done with verp and see what happens
Thats why I got off the verp
I was on 480 a day as well. I brought my doses down slowly and then stopped completely. I now have a lot less of the shadows, and remission times seem, for now, to last longer, as well as shorter cycles. I hope you'll have a break (and long one) soon.
So sorry you're feeling so awful, Jennifer. Having a rash everywhere is terrible. Don't feel badly about venting here. We're all here to support one another. I know that you don't want to wait in the ER for hours, but it may very well be worth it to get some relief. You may want to call your ER and ask which hours are typically less busy to cut your wait time. As far as the medication goes, I suggest that you call your doctor's office. An associate of his should be able to prescribe something similar with a more reasonable cost. If it's still too pricey, contact the drug manufacturer. They often have programs to assist patients with the cost. You may have posted this before, but what have you tried for your headaches? Botox? Acupuncture, etc? Have you tried many different meds?
That sounds like my exact story. So sorry for you. None of my family ever wants to sit in an ER with me. What med did they give you that costs so much???
He wanted to put me on Cymbalta which I wasn't thrilled about in first place but I have left him a message that I cannot be on that because of cost alone.
I take veripamil ans supertrimtan everyday I also find energy drinks stop the cluster in its tracks maybe these a connection with the taurine ???? God nows why it works but it defo does !, wonder if all cluster sufferers have a taurine deficency and the energy drinks replace that taurine, of weathers these a connection with the speed of blood flow after drinking the drinks xxx
?have you just had the drink only and nothink else ?and it good after the drink - ? Still if vestabe not took each day I would not want to imaion
Prednisone is great. Stick it in your arsenal as a once a year remedy. I had 60 mg reducing by 5 a day over 12 days. Taken A:M with food, milk, and a stomach protector. Can't remember the name of that, will get back to you if you're interested. Long term use is detrimental as Jessica pointed out. Quick fix could be maxalt melt or anything with triptins in like imigram
Did not know weather impacted head pain. How? Guess i will have to make note of that.
The weather definitely affects my head pain. As the different pressure systems move across the area in which you live, the pressure change does actually impact your body. It's similar to how old people will say that they can tell when it's about to rain because they can feel it in their bones.
Caitlin, there are many drugs for anxiety. Do you know why your doctor
wants you to use Effexor over some of the other meds out there? If you
decide to try it, I hope it works for you and that you don't experience bad
I know it sucks but there is not really anything out there to take the pain away, as long as you can maintain it you will be ok. I have had NDPH for 7 years this month and I just maintain with with pain meds. I still see my neroulogist once every few months my family doctor is the one that controls my pain meds. my advice is don't let it take you over, keep a "normal" life if not it will take over and it sucks, keep seeing friends and go out work if you can, just push through the pain as best as you can. I hoped when I was pregant it would go away but nope, but I really try to keep my life pre h/a
Don't get me wrong I want to throw it in many times
But I look at my 4 year old and we have had a horrible 3 years
And I never thought I would get through it
I maintain it with pain meds and I am not afraid to use them
Everyone is allowed a rant, where all human with an annoying pain, that on other ppl with this type of headache understand
It's helpful to rant. It provides us with an opportunity to console each other and take a bit of time to focus on somebody else instead of on your own pain. Remember that advocating for yourself is the best thing you can do. I know it's tiring and annoying and frustrating to keep having to get up in peoples faces but in the end it may be worth it.
She missed her last two yrs of high school,missed the social interaction, the she did not give up at all and is now a very successful college student living a very good quality of life. Once all of these crazy meds were out of her system, she put mind over matter. her pain ran a 12 out of 10!!! The stress of chasing the cure, the side effects of the meds, the travel across the country, once she said no more, her pain came down, she now is at a 4/10 and is leading a good quality of life.
She belives she will not be like this forever, the days of the recue coming and she had no BP at all, passed out cold. Plus she has severe TMJ, both mandibular joints dislocated with half of the bone gone in the left side of her beautiful young face. The less she dwelled on the pain, the cure and the more she took charge , she got her life back. It is not the pain free life but is one she can handle and she is happy to have, many people are so worse off.
I did not mean to demean her way of life, I'm just saying that I'm not ready to give up on the search yet. It is worth it to me to continue going to doctors and taking tests. My quality of life is very poor and I do not think that continuing to live in this much pain and not searching for something better would make my quality of life any better.
Another thing is that you may be eligible for botox. You have to have tried enough medications (which it sounds like you have) for your insurance to cover it. I just had my second treatment at the end of December and I think I'm noticing some improvement. I know it sounds weird, to get botox, but it's been used for Migraines by the Mayo Clinic since the 70s or someting, and the FDA has approved it for this use.
Awesome. Thanks for the info! I will get in touch with my neuro and see what we can do! You've all been very kind : )
Does anyone have diarrhea when pain is bad?
The first time my daughter did it we saw no effect but the 2nd and 3rd time it seemed to lessen the frequency of the spikes in pain and her rescue meds seem to work better with the Botox. It isn't really affecting her daily pain though. Took about 10 days to start helping. Good luck!
Started yo notice a difference in 2 weeks. I just had my 3rd course and it is helping. Good luck and keep up with it if you can.
I was told that it would not change anything, if it would at all, most likely not until after the second treatment. And then the third treatment wouldn't be covered by insurance unless there was a noticeable change after the second treatment. I got my second treatment 12/18/12 and I think I may be noticing a difference. I need to pay better attention. I'd say stick with it and don't expect a change until after the second. Good luck.
Thanks Danie. I'm visiting my GP next week so will talk to him about a referral. Dr Richard stark was actually recommended to me last yr, as was Dr Joubert (who I'm currently seeing). Just want to get some where! At 26 I hate the idea of living with this the rest of my life. All the best for your husband
What hospital is she based from?
My husband sees her at private rooms in Collins st office. He was referred to Richard first but his waiting time is ridiculous. he is so popular he is booked out until oct this year! I'm not sure which one she is based at specifically because she sent us to the western in footscray which has my husband's recent medical history. I think Alfred or Austin maybe. Can't really recall. Good luck to you too.
I believe you can go up to 40 mg, but that is not traditional. I also think you need to build up to that, if you don't get relief at a lower dose. It's usually paired with minocycline.
This did not work for my daughter at all for the NDPH and she also has asthma. Then she developed blisters in her mouth and on her tongue from it that were severe! So what works for some may not be good for others. Beware.
Singulaire has helped my sons asthma be more manageable. It is often paired with the antibiotic doxyclycline for NDPH. Take a probiotic if you are doing the two together.
Wow Janice, you just took this to a whole new level. I am removing myself from this page. I really do not like the censorship I see going on here. We suffer enough in our daily lives and face barriers just dealing with NDPH. I for one did not come here for more of that. Thanks to those of you that have been so supportive in my short time here.
Janice your babysitting comment was very condescending.. Anna explained to admin why she asked the question. Stacey hope you don't leave this is a wonderful support group for so many.
My post was directed to Janice C. My apologies to Janice R.H.
Just the blocks, the 1st time I had relief for about a week, after the initial pain from the injections. Nothing since.
I would like to talk to someone who had the RF. Sounds scary. What meds do help ON. The nerve blocks only last a few days. I too would like to go up to C2. Thats where most pain is. At base of my skull.
Yes. I do. Why are the C2 blocks risky? Thats right where i hurt the most. I do not know if my pain doc does RF.
Xxxxxxx Yzzzzzz I also had my headaches go away for 4 months following my ankle surgery. They came back when I got a flu shot. I have also tried DHE for my headache but it made mine worse during the treatment. It did help after the infusion was done. The DHE treatment was painful all the way around. The DHE wasnt painful going in but the Benadryl was. They would push the Benadryl then flush the line with saline and then administer the DHE.
DHE didn't work for me :( But I have heard success stories.