Wendy, I don't know. You'd probably have to do some research or talk to a
doc who does the procedure.
*~@~ Julie ~@~*
Wendy, I don't know. You'd probably have to do some research or talk to a
doc who does the procedure.
*~@~ Julie ~@~*
I would exhaust ALL options of pain control/ distraction and mind/body training, prayer and acceptance before deciding to undergo a procedure like the implanted nerve stim. Please don't take offense if you have one; I was one step away from getting one. I just found another path. A path that takes a LOT of effort , grace to oneself and the world, and self control. Praying for all to find pain relief and REAL LIFE today. Hugs!!
Cris, I did try everything out there and doctors won't do the implant on patients who haven't tried everything. It is the option of last resort.
Topamax is often referred to as Dopamax, as the side effects can be pretty bad. I also did not do well on it...I couldn't even remember my address on it, and was forgetting things all the time.
Xxxxxxx Yzzzzzz - I was on depakote and had horrible side effects from it. Are you taking the vimpat with the zonisamide for headaches? How does vimpat work for you?
On Depakote, I also gained weight, and it started practically tearing at my insides, it was extraordinarily painful and I had blood in my stool. It also made my pee smell aweful and I burped a LOT. I think if I remember correctly, the Topamax had no effect on helping my headache at all, so they just took me off of it. That may have been one of the ones where I trouble with concetration too though.
...OUPS, of course we are all different. Hope Adrienne you get a low pain day to celebrate the two years..of pain !
Interesting how it seems like a handful of us started around this time of year - I have my 9 year "headache-a-versary" coming up this weekend. We can't give up!!
My two-year anniversary is coming up in March. It's really depressing to think that you've had this for nine years Joanna Barker. I'm so sorry. But I do think that this time of year with the pressure changes can be worse, Adrienne Fraser, so maybe you really are starting to get better, but it's just difficult to tell because this weather causes you to be in pain more than you thought you'd be. I'm having a really difficult time with depression because it eels like this will never end, but talking to people, having support groups, and seeing a psychologist really helps.
Yes. I am thank you. I went home, took some meds and went to bed. I stayed in bed until it was time to attend my class. Although I wore sunglasses the entire class! Oh well it helped so I don't mind looking odd!
Good for you. :)
*~@~ Julie ~@~*
Don't feel like you're alone looking odd at class. I'm no stranger to attending class in a loose-fitting ball cap and sunglasses. But there's nothing I can do about the sound of the fluorescent bulbs.
I agree with you Audrey, we have to be strong people to face each of the year this terrible pain of ours. One day at a time, the motto of another Association which applys so well to us. Every night I tell my wife tomorrow will be a better day. While she sleeps, I get awaken by the pain and come to the PC until it fades down enough to go back into bed. We are strong people to live with our NDPH, we are special as well of course. Others would have our pain for one minute and would rush to the E.R. Together we are even stronger. OK, guess I'll try going to bed !
Very well said :)
This headache has knocked the joy right out of my life. I've been having some really good pain days and I'm so grateful for that.
In my case, I'm finding that anything and everything I can do to reduce inflammation in the body helps with pain. This means eating a more alkaline diet, rather than acid-forming foods, to start. It also means taking proteolytic enzymes daily to combat inflammation in the body. Basics like good quality & quantity sleep, moderate exercise, and lower stress levels also factor into feeling better more of the time. I choose to see a chiropractor who specializes in treatment of migraine and other headaches, and also a naturopath who does myofascial release bodywork. This regimen is helping me tremendously, especially when compared with everything else I've tried in the allopathic realm for the last 29 years without success, and in fact being made worse. I've also gone to a dentist who is correcting my bite (made lopsided by previous poor dental work in the first place), which helps with TMJ pain, contributing to headache.
Thanks Lani. I am seeing an good chiropractor and naturopath and was having fantastic results were I was almost pain free for five months However we have had a lot of hot days (I am in Australia) over 40 Celsius and this has kicked them off again and I have not been able to get them under control again. All my old tricks are not working....
We as a family have cut out many of the bad stuff from our diets...not more food dyes, corn syrup, preservatives, etc hoping I would start to feel better. No luck, but I know we are all at least healthier.
Do you take meds rachel? Is pain constant?
Yes pain is constant but luckily not unmanageable. It usually is a five to 6 everyday so I am still able to work. I don't take any meds but if it gets really bad, excedrin will bring it back down to 5 or so. I still haven't found anything to get rid of it completely yet.
Xxxxxxx Yzzzzzz, you sound just like me! I have been searching for 6 years and still havent found anything that has helped. I know mine isn't lyme disease though
feel free to report these people or message them yourself. Here is another spammer selling girls: https://www.facebook.com/latifah.alan.50
My mum suggested getting some a while ago, but trying to find some in winter that look like normal glasses and silly sunglasses is a joke, don't won't to have to see the optician and pay their prices lol
Rose tint is supposed to help, but it didn't work for me. I have an extreme case of photophobia though, so may be if you are not so light sensitive it might work better for you.
theraspecs are supposed to help
My niece was on amitr. and it helped the stabbing pains she would have on occasion but it did not reduce the 24/7 pain and made her extremely sleepy.
I've been trying it since sept, on 75 mg now. No change in headache yet but it does help me get more sleep at night and I think it's good for me to be on an antidepressant. I do struggle with weight and being hungry all the time. Hope it helps you. Also I take maxeron? For nausea, no side effects on that.
Amber what is maxeron? Is that same as reglan?
Oh good luck Claire Bird. Have you tried med free?? That is what has helped my daughter.
That was the first med that they had me try. I had to stop it right away because I felt like I was having a heart attack and problems breathing. But, I also have asthma and its not supposed to be given to people with asthma...just something my doc overlooked which is why i switched doctors because that is scary.
Hi Kristina Pearson I am asthmatic, but since I have not used my pumps for a few yrs & after great lengthy talks with my consultant and GP we decided to give it ago, but I have a back up tablet to try if this one does not work. so the the plan so far is cos I'm having such a bad time, my GP said stay on ure old meds (the ones I'm weaning off from but slightly lower dose) for the nxt month just while I get used to the beta blockers, then if all of I can come off the old ones. Fingers crossed they do something
Does it help nausea? What bout reglan?
I hated Reglan! It does work but alot of people have bad side effects. It made me very angry and irratable. I pretty much told my husband to take my iv out and he needs to tell the nurse we were leaving. I was nice about it to an extent, lol. Later I learned it makes people aggitated. Boy was I!
The dramamine/meclazine that is like bonine...works very well for me! Takes about 15 min to kick in but has worked every time!
Zomig is a migrane drug I used to be on that didn't work for me x
the injections work excellnt -sumatriptain
Zomig is another type of triptan (specifically zolmitriptan). It is similar in results as the triptan injections (I assume Imitrex?). I hate needles, and the injections would sometimes give me rebound attacks, so I have stopped using them. I use Zomig in nasal sprays; the relief is not as quick as the injections, but will come under 5 minutes (usually 3-4 minutes).
Until now, I have never experienced a rebound headache with Zomig, though I haven't used it more than 10 times, so we never know. It also helps calm my nerves when I think about having an attack outside my home.
Agree : what is NDPH, fluctuations (periods of the day + range of intensity, location(s), medications, relation if any (light, temperature, food, lack of sleep), migraine or not, physical & intellectual impacts, known treatments, In fact, those are NOT questions like you asked Kimberly but rather situations lived. Questions would be like : what is the diference with a migraine or headache, known medications given, experience with those treated, results, aware of ONS implants, that would be a start.
Ask your Doc about Tramadol, Naproxen, and Ultracet. All non narcotic and some you can take with otc but you have to know which ones so you dont take too much of a single drug at one time. Ask the Dr or pharmasist. Also seeing a specialist is my best advise. They can put you on a daily med to "Help" keep the calm, but that can take ALOT of trial and error. I am currently taking a blood pressure lowering drug, a small dose, as my normal blood pressure is 110 over 70. It has helped me, When I tried to go off it after a course of Botox my headaches became much worse again and since I restarted the BP meds my headaches have been more tolorable. It is very frustrating and I have been ready to throw the towell in many times, but we have to do what we have to do and If that means I have to see 2-4 Drs a month thats what I will do. Good Luck. Message me if you need/want.
Stacey, If I could give you a magic answer I would give it for sure. As most of us, we're in the same condition. As suggested, review your situation with your present doctor. If he or she can not help you, maybe a referral to another doctor could help you out.
One thing for sure Becky is that there is no hell after our death; we actually life our HELL on earth. You're a good example. Yes, it gets worst and worst with the years, that is what I find out too. I didn't believe it would a few years back. Don't want to think of the future ! What keeps me going is my family and the love around all of them, they accept me as I am. Also, what helps me is that I compare myself to those worst than me like paralyzed in a wheelchair, I stop complaining. Still I wish I would appreciate being better, like all of us here in this Group. Love to all. Michel.
I don't have epilepsy, but I have had siezures before though. I have been wanting to do genetic testing as well, but it costs too much
Interesting. My late father had epilepsy. Before I started my headache medications my headaches use to cause cognitive issues like confusion, trouble processing information, and some speech problems. I also noticed that when my headaches returned this time I started have trouble recalling common words when speaking.
I've had several different nerve blocks in various positions in my head and neck. Something that I read a few years ago....when you are ill the brain sends out these cytokines to fight an illness, but with NPDH, it may be possible that the brain did not call these protein molecules back, and they re now are causing problems. Worth looking in to if you haven't already.
I had a few nerve blocks without success, Botox didn't help either, in fact name it and I most probably have tried it: in twelve years you had the time to try a lot of meds, tests, exams, etc.. Brigitte: Hôpital Neurologique de Montréal, j'y ai vu Dr Michel Aubé une fois et a dit à ma neurologue de Notre-Dame qu'il ne voyait pas ce qu'il pourrait faire pour m'aider. Alors ce fut ma tentative à cet endroit. Je vais peut-être cocher au CHUS à Sherbrooke, sinon je n'ai plus d'enfroit où aller. À moins d'aller Clinique Mayo...si je gagne la loterie, mais même là ce ne serait qu'une autre tentative. Sorry for those who speak English; Brigitte was asking questions related to locations around Montréal in Québec Canada that went to which is about most locations !
Bonjour from Calgary! I had a virus prior to my NDPH as well. I've seen some info stating that doxycyline and singulaire taken together has worked for some ppl. What antibiotic were you put on?
Must say no Robin. I received it in the last 3-4 years without any effect.
I have had increased symptoms after the flu shot. There was a definite spike in pain. My headache also started right after I got a different vaccine (for meningitis) so I don't know if it's all related for me.
I am just frustrated because I was doing so well. I felt like my old self again. I was still having headaches but they were like a normal headache and I could take OTC pain meds and get rid of it. Now I am back to pain everyday. I am about to start my last semester of my MBA program and I am afraid my headaches will interfere again.
Sorry Claire that we feel this way, not only you have to deal with the headache, your liver has to join in to make your day terrible. Pretty difficult toi remain on top of the situation, but you're a fighter !
not just my day but the last few months, its a on going battle right now, which i now have to see a specialist for to see if any damage has been done as i was on them for so long...u would think they would monitor it abit more closely, as we only have the one liver plus i dont have time to be ill like that grrr. know u guys would understand x
so sorry, hopefully you will get your meds situated and you liver back in order soon. Wishing you low pain soon, Happy new year too! (((HUGS)))
Wow ! A third men that identifies himself, lucky women ! Yes, I agree Gaz, we feel like guinea pigs sometimes: try this, try that, do this or that. If you have continuous headaches, you would most probably be identified as a NDPH. Feel free to evacuate your pain, frustration here, the Group of women are wonderfull.
Gaz, sorry that you too suffer from NDPH. I know you'll learn a lot about different options from this group.
My dr said you need to be on the right dose for you for 6-8 weeks before knowing if it will help at all.
Thanks so much Janice, I will call the dr on Monday and let them know that I can't take it again
Hey Dr. Janice, I also take migranal and I have one leg that swells and now my legs and hands seem to fall asleep really easy. Of course my family doctor says it has to do with my veins and we will throw a little blame to all the stupid weight I have gained...I mentioned it to Dr. Nissan at my last visit be he was more concerned with my midnight cooking because I was on ambien. What do you think?
I would say if it happens when you take the migranal it's something to worry about
The problem is that with such a small percentage of headache sufferers having NDPH, the docs don't care a whole lot about us and don't get the funding for research for such a small pool.
*~@~ Julie ~@~*
My headache is not affected by my cycle. My headache started when I got sick with flu-like symptoms and a headache. When I got over being sick the headache stayed.
Xxxxxxx YzzzzzzBaker mine tends to get worse when my period is due... But do it seems like everyone else, we we're sick then I got a mother of all migraines then it never left me, now it just varies from background headache to migraine
the two things that I take a promethazine/phenergan, and I take a homeopathic med called ipecacuanha. Mint tea will sometimes help as well. If I get bad motion sickness I take dramamine too.
If Maribela Cantu's suggestions don't work, you could try acupuncture. That worked for my nausea (unfortunately not the headache). Then again my nausea ended up being related to another medical condition so I don't know if it would work for headache related nausea. Hope you feel better soon!
Have never heard of electrical accupuncture. Or using klonipin for head pain. How is klonipin different from all the other benzos. Lorazepam helps mine.
The first acupunture didn't give me a diagnosis but the one that did the most recent acupunture, told me I had a thyroid problem (I have big eyes) I don't have a thryroid problem, or need the diagnosis, just wanted the acupuncture, haven't been back since, do need to get it again though
Wendy, it's a little hard to describe. It's sort of like little buzzing waves. It's a pleasant feeling and you mostly don't notice it. Some programs make it feel like an internal massage.
*~@~ Julie ~@~*
Xxxxxxx Yzzzzzz I came to accept my headache through the help of a biofeedback doctor/behavioral psychologist. I can't overestimate the importance of psychological guidance for a life altering event like NDPH. I don't know about you all, but my headahce literally changed my life: I quit work, dropped my courses at school, and basically stayed in bed all day. I lost friends and all the activities that used to bring joy to my life. When you really think about it, it could be better to accept the headache, and learn to live with it, rather than being a servant to its many vicious whims. I know this all sounds theoretical, but it means becoming more active in various parts of your old life (family, friends, work, play), little by little.
And it is hard. And it's really painful. And it may not even be possible for everyone; I don't know. But if you can get there it is (at least in my experience), really freeing. You learn so much about strength and weakness and life. To me at least, searching for answers and constantly failing to find answers is a miserable experience.
So sorry you are having to deal with this, my 7 years is in June. It's definelty rough, but glad you found your way to this group, we're here when you need us. Welcome
Wow. My daughter's NDPH started April 18, 2006. What was in the air then?? We still don't believe it either. She was in 6th grade and is now a successful freshman in college despite it all. She takes Zanaflex once in awhile to help her sleep... Always wanted to try botox, but she wasn't adult before...let us know if it helps!
Welcome to the group. I wish you no one would have to be in this group, but here we all are. Oct was my 5 year ann. If you are close to NYC you may be able to go to Philly. Jefferson has a wonderful Headace center. I found them and have felt better with a diagnosis to boot! I will recieve my 3rd course of Botox in 2 1/2 weeks. The first course worked better than the second, but my Dr. said stay with it and get the 3rd course becuase it may work better than the 2nd.... guess I will find out. Good luck to you!
I would look into disability where do you live? They can't do what they did I Wouk fight that
Thanks everyone I will consider and research all of these ideas.
Also, I suggest seeing an occupational therapist if ones available to you. I found myself laying in bed most the day until i saw an OT to help me figure out how to schedule my day to be of most benefit for my health.
My insurance just approved it. Waiting for an appt. I'm scared but I don't want to take daily meds all the time as I have been for over a month.
I had it done about 3 weeks ago for the first time, it made my head worse for about a week, but I've had no migraines for 3 weeks, although my NDPH is still there, not having the extra headaches is an improvement! The weird frozen forehead is strange tho!
I go to the pain clinic in two weeks for a consultation. Then we'll start the process of seeing if my insurance will cover it or not.