Xxxxxxx Yzzzzzz constant daily headache could be something like occipital neuralgia or another type of TAC,many of these come along with clusters a lot of the time. I am the same as you there is almost constantly something going on in the attic,suffered for many years with migraine then one day a monster cluster showed up,since then it has been a daily ordeal be it the shooting electrical jolts you describe or the dull thudding. Im ok dealing with most all of these other symptoms it is the cluster attacks that I am simply terrified of, so it is those that I try the hardest to prevent and I try to always be prepared to abort.
Don't give up, retry until you get it!! Prayers up for you!!
appeal route/litigation (not sure process where you live) .. often claims are denied initially on insurer physician evaluations, need to be pressed. Very frustrating, exhausting :( .. but don't let it go, at least get some legal advice ... even if you feel you don't have the energy for it. Good luck ..
Praying here my friend. So frustrating. Keep us posted.
Cindy, don't give up. I know it's really hard I'm on my 7th day of a migraine and want to go to the ER but I feel the same way you do. I get Botox too and just be given 2 weeks it might take a little longer before it takes effect. Don't be discouraged their has to be something out there for us so we can get relief
I am in the United States
I currently see a headache specialist in the Headache Clinic at Denver Children's, I was thinking more along the lines of a physical therapist type where I would make weekly or monthly appts or whatever, and use them less for medicine stuff and more for physical stuff, but it's hard to know what to describe when I can't remember the word I am looking for to describe them D:
I think you're thinking of Craniosacral therapy. Sort of a cross between massage and acupressure. My granddaughter went to an occupational therapist for it. After her first session her pain went down to a 4 for a few hours then right back up. Further sessions didn't help at all and after 6 sessions she and the therapist decided to quit. If you try it I hope it gives you some lasting relief.
I had both ears done 4 months ago and I have had no change. I hope it helps you though.
I had mine done about 4 years ago and since then I have only had one bad migraine or bad turn
I had mine done, it seemed to help a bit, I had to put in a plastic spacer for an MRI and had a reaction to the plastic and got an infection. Had to take it out. :(
Migraine meds have come a long way. Had them almost 30 years.
Ya i tried amitriptlyne way bak but dnt remember if it worked? and yeah thanks for new meds
I got mine right side done in march helps but I still get pain. Usually the pain is on my left though I'm gonna get my left side done soon. Just takes awhile to heal I would recommend one side at a time
How often were her migraines before pizotifen? Has she had migraines for a few years? Is the theory that the meds could have fixed the problem in the hope when coming off they don't come back? I just wonder if stopping will just bring them back. My son starts school next year and obviously it would be good to stop before then, as they do make him drowsy. But if stopping means migraines I won't want to do that. Regular migraines happening at school would be far worse. X
How did it go Claire Collis?
First 5 days on half dose were ok, no particular side effects, then the daily migraines came back. Yesterday I decided to give full dose and already much better, so have given another full dose tonight. I'm going to speak to the paediatrician and see if we can alternate a full dose one night a half dose the next night to see if that's any better. But stopping them completely at this time doesn't look promising. X
I have the cognitive issues / can't remember words or sometimes even what I was talking about!!! Mine have gone to silent since having my faith pierced.
I suffer the hemiplegic migraines not pretty. Just started me on amitriptyline fingers crossed it works.
My migraines started at 16 but now at 32 I have silent ones now all the pleasure of the aura etc but without the head pain!
I think those very words every single time I imagine drilling holes in my head!... I also figure I wouldve just been burned to death hahah too funny!!!! I'm glad we can find humorous thoughts in our most painful times
That's the only thing that keeps me hanging on his the humorous thoughts during a lot of pain.
Laughter is a plus!! That and the though of prison food... Keeps my temper way down when I'm at the worst moments! Hahaha
Thanks Chris Uswe Plastow good to hear im normal hehe just thought it might be something else or worse as its exactly the same signs n symptoms of ch migraine just didn't know if could move around the body or not
I'm eye and jaw bone. I've once ever had it on the opposite side. No lumps here (yet). I hope you work out what it is!
Thanks CJ Schmulmar as i too get in my jaw on right side but so far its just the left eye starting gonna make appt wit neuro see wot he says
I have diagnosed NDPH just over 4 yrs,since last year my pain level has went from 8/9 every day with medication to a 3/4 once every 2 weeks which I manage with regular pain relievers,I completely changed my diet,started working out every day for 1-2 hours & stopped taking any Perscription medications as nothing was doing me any use at all,I started taking apple cider vinegar,kelp,spirulina,cayanne pepper capsules,maca,capsicum fruit capsules,msm powder,milk thistle,ashweganda & agnus castus drops,I also have a weekly back,neck & shoulder massage to ease tension,I know it sounds like a lot but I really was at my wits end with this awful headache & willing to try anything this is what is 100% working for me so far & I really really hope you find something to help,based in Ireland x
Lol. That's a lot of things! Is there anything specific in all that which you feel is the most effective thing?
Xxxxxxx Yzzzzzz ohhh God don't I know it's a lot
Xxxxxxx Yzzzzzz yes I saw the post and I wasn't referring to your comments, I was talking about the man who was promoting some drug. I actually deleted all his posts about the substance that he was suggesting. but perhaps when deleting his posts your post also got deleted because they were comments in the same thread. when I delete one major comment, it can sometimes delete all the comments below it. In any case, I think you were right to defend yourself against him and you I saw you tried to explain your reasoning. I like the link you posted with information showing how the substance was illegal. feel free to message me anytime anyone is being aggressive . cheers!
Thank you Manuel Lara. I am not concerned if it was deleted. I am glad that you are active and protective of your members. Facebook can become an insane free for all. Glad to know you are there for us. Yes I will pm if things get weird. You have a nice group here. Thank you. God bless.
To me, it seems like the way to go is to just straight out help people in the way that they want to be helped. Some people come here looking for ideas on what to do, this is where the list of things to try and not to try is essential. These people are seeking out guidance and answers that others may have. The other group of people seem intent on experimenting with themselves and reporting back their experiences in the hope that they figure out some new trick or aspect to this disease. Both groups of people deserve to be treated with respect. You can listen to people's ideas, still give your opinion on them, and still be supportive of new and old information, regardless of your take on the situation.
I take phenergan for nausea/vomiting.
I have to have food with whatever I'm taking for the migraine or the nausea is worse. Unfortunately not much will stay down during a migraine. My go to headache food is mashed potatoes and gravy. My family makes lots of trips to KFC for me.
Here are a few things to try: turn the air con down as low as possible, eat half a head of lettuce, a Beef Burrito supreme from Taco Bell and if you can handle it, a can of sardines. May help.
Could you please tell me the name of that allergy need that helps with the pressure changes? My son had good control now, but when he does very one is usually related to that, but his rescue doesn't work on those.
Xxxxxxx YzzzzzzLintock pantanase. It's a nasal spray. My husband started it too bc he has migraines with pressure changes and it has helped him a ton too! I have a friend that is a PA at an allergy clinic. She sent me a research article to give to my pediatrician if he had concerns. He did, but relented. She said shots work the best. She has the same group of people come in every pressure front for shots. They are adults though. I wasn't up for shots yet.
Thanks I will download now
if you carry a lot of tension in your neck and it worsens during migraines, put this type of thing on the back of your neck. It will take the edge off the migraine and loosen your neck muscles. Good luck, hope it helps!
The Japanese mint oil is an old German based recipe you maybe able to tell that by the box. It works by helping to take the pounding and tension from the temples, pressure points and neck areas. There isn't any creme like Voltaren etc that works better for helping loosen the muscle.
Walmart has it to
Not all the time. Can you email your neurosurgeon and ask them why this is still Happening?
I saw him 2 weeks ago. He said it's a symptom for a neurologist. I also saw my otolaryngologist that did my surgery with my neurosurgeon. He said it's something for neurology as well. Now, it's just a waiting game for the neurology department to get back to me. To see if I'm even a canidate as a patient
Hang in there Bee Ratsachak! i started getting migraines when i was 12. at 14 had a tumor and cyst removed. I wish i could say it helped, im 38 and still a member of this group for a reason. the support, laughter and videos come from a place of understanding here. I do wish you much luck with getting into a neurologist...but don't rush too much, sometimes rushing puts you with a quack that knows nothing.
Oh, how I miss Syndol ( well, Boots own version). They were brilliant at heading migraines off at the pass. A couple before bed occasionally and bingo!
I have bought them from the internet. I combine them with over the counter cocodamol so that they are basically the same as Syndol which always worked for me. I had actually forgotten about Syndol as they were out of production for so long. After the horrible side effects of Topirimate I'm going to try Sleep Aid and Cocodamol again and see if they help.
You should be ok on the sleep aid. I bought some from an online chemist so they should be legit then. Just make sure you don't take them constantly and not for more than 3 days at a time then with a break of days in between. I know this from experience! Lol
Xxxxxxx Yzzzzzz my 15 year old daughter won't consent to doing them either because she's already 8 solid months of head pain and she doesn't want the pain made any worse than it already is. We do the occipital nerve blocks and they seem to unlock her neck, still has neck pain but at least she has movement.
I have never heard of the nerve block till two days ago. My pain management doctor told me about it. I'm so sorry your daughter is going through this. I remember getting them when I was her age. I don't wish this upon anyone. I have to see my neuro about the nerve block, my pain mgmnt doc won't do it without his consent because this all stems from a car accident. I've been getting migraines since I was around 1/2 years old but never like these that I've been getting since the accident. And never for this long.
Botox did not work for me
I always like your answers Jeff. Say it how it is
I'm one of the lucky ones. I get 1 or 2 bouts a year. My last one ended June 11th. It lasted 103 days. This after 10 CH free months. I usually have a 6-10 month free period between the sieges. I try to appreciate each CH free day though I amaze myself how I often take it for granted. During the siege I usually have 3-5 a day. O2 and Imitrex gets me through. One helpful thing I do is to keep a really detailed CH spread sheet. It's been a big help in revealing patterns I would have otherwise missed. Other factors that have helped include a very understanding wife of 38 years, great kids, faith that this too shall pass and the fact that I got rid of my hand Gun. I'm now on D3 and hope that will help. Finally there is no substitute for a Neuro who specializes in HA. At my age of 71 I accept that CH will be with me for the rest of my days. Still, life for me is very, very good indeed. I do hope it all goes well with you.
So very sorry you are struggling. I do hope you get relief soon.
Xxxxxxx Yzzzzzz I travel to Denver (about 4 hours from where I live) every 3months now for my headache checkups... switching was definitely worth it, we have one Neurologist (although I think she left now or there is another one or something) because we live in a small-ish area and I HATED her, she implied many rude things to me (classic "well maybe it's cause of stress" when clearly it's not stress related because the only stress I ever had before my headache was a back injury from years ago... the only stress I have now IS my headache you know?) But anyway she was a b*tch and was always on her cellphone texting, chewing gum super loud, generally being unprofessional... (when a teenage girl says you are on your phone to much, it's probably true, lol) So we went to Denver Children's and it was the best decision we could've made... I see Angelina Cohler and she is the most amazing person and has really helped me emotionally with accepting my situation and trying to move forward and make the best of my life... And although I still have the headache and there aren't any more treatments left, I am ok with that because she has convinced me that I am capable of anything I want in life, I just might have to go about it a different way... I had given up on finishing the GED and going to college and ever having a job that wasn't a desk job that kept me inside all day, and somehow I am now finally looking forward to finishing the GED and joining the Anthropology course next fall, which would put me only a year behind where I was supposed to be... I cried actual tears of joy when she explained to me that it wasn't hopeless and that even with my pain I can make something amazing out of my life, and here I am planning on studying to be an Archeologist, which I never would've thought possible without her pushing me (and my family) to see that my life has not, in fact, ended... anyway that was long and rambly but my point is that hopefully by going out of your way to go somewhere maybe a little inconvenient, you might find your "Angelina" who helps you, either to get better physically or emotionally :) we all have a shitty situation to have to live in, but I do believe now that although it's harder for us than most, we can all get to a point where we live, not a normal life, but a fulfilling and happy one :)
Xxxxxxx Yzzzzzz, I hear you. I have a strong belief that God is in control, and although he doesn't wish any of us to suffer like we do, I know and I trust that he is with me. Some days are more frustrating than others, but I also know things could be SO much worse. I have a great job that I do from home. I can function well 95% of the time. Most people would never know I am in constant pain. For me, it's a balance between being ok living like this, and also wanting to make sure I do what I can to be an advocate for myself. Being from a smaller town with no headache specialist is frustrating because the doctors really don't know what to do with you. I definitely will need to travel to find someone knowledgable in NDPH.
You'll get used to it Kristen Hillyer, and find that you'll often have stand up to your doctor's advice & conclusions My own neuro-headache specialist was such an arrogant hearltless ignoramus! I definitively don't care about "hurting his male ego" any more, IN fact, I've just given up on him altogether after 18 months. You are right: do your own research and be your own advocate. Neuro's are clueless about ndph, often hardly even bothering to look for the possible cause....instead, they just put every patient tru the same absurb protocol, clearly designed just to "numb" the pain at best, not to cure, and usually with negative or neutral results,. Occasionally some people do seem to find some relief tru the neuro's approach, but it' always partial it seems, never COMPLETE relief (and often temporary, too, as ndph has a devilish ability to become resistant to most drugs). It's long dreary path to go down and I wish you the best of luck... you're strong. I just passed my two year anniversary & it feels like an eternity already! insane that people have to sufffer for so long, and that so little is known or done about this horrid ailment.
O2 is what works for me also. All the meds are so bad for us and do very little to help the pain. Just not worth it for me. The vitamin D regimen works very well for many people. Also energy drinks. There are many alternative treatments that are showing amazing results also.
try riboflaven (B2) 400 mg a day.....it reduced my issues by 80-90%
It's sad they have to grow up with that but kids adapt to things faster then we do and have a natural ability to be compassionate. I had one so bad one evening and I was alone with my 7 yr old. He put me to bed, brought me medicine, got himself a safe snack and curled up next to me in bed for the night. He took care of me and he's a young man of 12 now. He remembers that he took care of mom once when dad was gone fighting in the war. My husband was deployed at that time.
Oh what a kind hearted young man you've raised! That is adorable! It is sad and it is true that they adapt quickly. :(
My boys are grown now, but when my first was born, I was having migraines 3-4 days out of the week. My husband would come home from work to find me hanging over the railing of the crib trying to take care of the baby. He would pick me up, put me to bed and take care of the baby. Luckily it's true, as others have said, that little ones seem to understand.
Be aware topiramate can also have some psychotropic side effects. Had to stop as it made me a bit psycho.
I live in the mountains of Washington...some of the highest in the US. I actually live 2500ft up and have gone over mountain passes repeatedly up to 6500...no hits unless it is within my time. I am chronic so I don't get a break. But I do not notice any difference when we are driving.
I've gained on it. Weird.