Chronic daily headaches and migraines ruining my life.....

Hello - I am new to this forum. I joined because I don't know where else to turn. I am so desperate for help right now, and I have no one to go to. I have suffered from migraines/chronic headaches for the last 10 years. Over the past year, they have turned into daily chronic headaches, most of them migraines. Some are worse than others, but I honestly can't remember the last day I didn't have a headache. I was hospitalized February of 2005 for a migraine that lasted two weeks straight with no relief, and treated TERRIBLY by the way. Ever since I got out of the hospital things have gotten worse. I had headaches so bad that I was on 4 10mg/500 mg Hydrocodone a day. I was also taking Ambien at night to sleep, because the pain was so bad I couldn't even go to bed at night. Unfortunately, the Ambien had a very bad effect on me, and caused me to be in a really bad car accident, and I ended up in the hospital last August. Immediately following, I ended up going to rehab because they decided I had to get off the pain killers and couldn't do it on my own. The thing people didn't realize was that the only reason I was taking the painkillers was because I was in so much pain. I haven't taken any painkillers since August, but I still have the daily headaches. The bigger problem now is that even if I need painkillers, I can't get them, because now I am looked at as having an addiction problem. This is a problem for me because I can't find anything else that works. Headaches are literally ruining my life. I don't know how much more I can take. I go to bed at night with a headache, and I wake up in the morning with a headache. I won't accept living with these. I have seen so many doctors over the years, and none of them have been able to help me. I think the doctors I have seen have actually made the problem worse. I have had multiple MRI's and CT-scans over the years, and all of them came back normal. I am still left with the uncertainty of not knowing what is causing these headaches. I am so miserable I can barely concentrate on anything. I am afraid my work is being compromised because the headaches rule my life. I have taken every triptan on the market, and Relpax is the only one that has worked for me, but insurance only covers 6 tablets a month, and I get a headache every day, so you can see what the problem is. The only medicine that gets rid of the pain is hydrocodone. It doesn't get rid of the headache, but it at least provides relief for a short period of time, and for people who suffer from migraines, ANY time without a headache is a good time. I just don't know what to do anymore. My family doctor is worthless to me. I have an appointment scheduled to see a new neurologist on February 2nd, but I am not very hopeful because I have never gotten any help from a neurologist. I am tired of being looked upon as someone who is only out there to get medicine. I am only out there to get RELIEF. I don't know why that is so hard for people to understand. I don't want to be treated badly anymore. I want to get help, and I want to get rid of the headaches. I am only 26, and I really cannot see myself going through life this way. I have no quality of life because of headaches. I am in desperation right now. If anyone out there has any information that can help me, I would be truly grateful. I am so miserable. Pain will make you do crazy things. I have been in so much pain, that I actually wanted to fall down a flight of stairs so I would have some other pain than a headache. That is how bad the pain is. I don't think a person should have to live like this.

Help anyone???? I am going on day 10 with the same headache, and nowhere to turn....

Thanks for the help. I actually used to take the Imitrex injections, but they stopped working for me. As did all the migraine medications I have taken. The only thing I get SOME relief from is Relpax, but I have to take two for each headache, and I only get 6 a month...and I have headaches every day....which doesn't work out too well for me!!!!

In regards to what you said about the neurologist - I have a letter, as well as a list of every medication I have taken, which ones have worked, which didn't, what triggers my migraines, etc. I have as much information as I possibly could put onto paper. I am really hoping that helps.

I recently started taking Toradol pills to help, but they only work sometimes. I just don't know what do to anymore!

Hi EE -

I posted in my thread in reply to you. I'm so sorry that you are going through all this. I can relate. At least we know that we aren't the only ones. I will keep you in my prayers. And please keep us updated as to what plan you and your neuro come up with and how you are doing. I'm so glad that I found this place (I'm new too). It has already become a wonderful source of information and support.

Take care,
Jen

Hi EE -

I was wondering, have you ever had a lumbar puncture done?

-Jen

Hey EE,

I COMPLETELY unterstand how you feel. I am also 26 and have suffered from Chronic Daily Headaches/Migraines for over 6 years now. I know you mentioned taking Triptans but has a neurologist ever put you on preventative meds? When I first started seeing my neurologist a few years ago we started me on topamax....it provided very little relief and we had to keep increasing my dose every few months, and i got fed up,,,so we switched to Depakote...again only provided a little relief and the side effects were bad...hair loss and weight gain. I went off the Depakote in early July of this year and was so fed up with taking all kinds of meds all the time i told my neurologist i wanted to try a few weeks with NO meds at all. (not including ibprofen or tylenol) ...well that month was HELL. I went to the clinic for Nubaine Injections i think twice in one week and basically suffered a headache all day everyday. So finally i went back and asked to try something else. I started on Keppra in early august . I also take Relpax and Imitrex...but like you the imitrex only works if i take it every now and again. The relpax works better but only if i take 2 ..and if i have to take it more then 2 days in a row it doesnt seem to work anymore. about 2 weeks ago i decided to start taking Calcium citrate with magnesium, and B2 vitamin. My primary care doc recommended that and said its been shown to help CDH's. Right before i started taking those, i was suffering with a headache for about 4 days straight and ended up in the clinic for a nubaine injection TWICE in ONE day. I was so stressed when i went in the second time that day because i just felt like the doctors look at me like im only there for the drugs. Its very hard when no one understands what its like to be in pain EVERY SINGLE DAY. Since then, i called my neurologist and asked for some samples of other Triptans to try. He gave me axert and Maxalt. I didnt like the axert..it only gave little relief and made my stomach upset. The maxalt worked very well. I only had 2 samples but it worked great and very quickly both times. I see the doc again on the 29th and am going to ask for a script . Anyways, sorry to be rambeling but i want to try and provide as much information as i can that might help you. I know whats its like to not have anything work and be in so much pain. This past week has been GREAT for me. ...almost completely headache free. (for the first time in a VERY VERY VERY long time)

about 90% of the time i wake up with my headaches. Most of the time between 3 and 5am. Now in the past this was the big problem because i started my day with a headache and coudlnt seem to get control of it. But this past week, i still woke up around 4am with a headache, but i'd get right up and take the Maxalt and go back to bed..sometimes with a cold rag on my head/neck. By the time i'd get up for work at 7am my headache was GONE. ....and its been like that all week. So, i still get the headaches but they have been very controlled so far. I'm being optomistic and beleiving that the Keppra and calcium, B2 is what the difference is. I mean thats the only thing different so its gotta be right? Also this week if i felt a headache coming on during the day i'd take xanax and that helped too. ..i guess because my headaches are tention type headaches and the xanax relaxes me? just a guess. i dont really care how it helped...i just know it did and thats good! lol Im going to talk to the nuerologist about that as well because i only had a few from a past prescription and just thought i'd give it a shot.

Anyways, enough about my situation, i basically just wanted to inform you about the Keppra , calcium and B2. Maybe its something worth asking about. I'm pretty confident thats whats been helping me this week. I'll update you again in a few weeks and let you know if my headaches are still controlled. I hope this helps and i hope you can find something that works for you. Its terrible living with such pain all the time. ....i joined this forum about 2 weeks ago....its great being able to talk to other people who know what your going through. Let me know if you find something that helps!! -Jenn

hi its ashley  this question is for jenbug 731.  hi  how much calcium and b2 vitamins do you take a day. also you said its calcium citrate with magnesium. is that all in one pill? and then you take the b2                          please let me know  thank you  ashley

Hello,
I have had headaches since I was 10 and they have been chronic since
I was 11. I currently am 18. The last time I have been without a headache is when I was 11. These are accompanied by migraines at least once a day. I have been prescribed everything from lortab to sumatritan to magnesium and b2. No drugs have helped. I am supersensitive to medication. Everything I take gives me horrible side effects. I was taking massive amounts of gabapentin and and I crashed my car because the side effects were so strong. I try to meditate once a day and workout almost daily. This helps to a degree. School is pure hell since the florescent lights and people and really the thinking all make my head worse.
I have been depressed for 2 years now. I'm not suicidal anymore, though I once was. I have had just the all around blood tests nothing really specific, and cat scans and mri's of my head. Nothing was found. I guess does anyone have an advice? I currently am on amytriptoline and cyproheptadine for sleep. The pain usually keeps me from sleeping. During the summer I dropped a jack on my foot and broke my ankle. The only thing I could think at the time.. "My god my headache is gone. Thank you" I am desperate for answers now.
I see a chiropractor weekly and that doesn't really help. Like everyone else he thinks that my problem is in his field of expertise. No one has any idea what is wrong with me.
I am glad to know that there are others out there though I have never found anyone as young as me. I am sorry that you all can all regrettably feel my pain.
I am able to keep my grades up (B's and A's) one C but I am going to start college this August. Frankly I just cannot see myself with these headaches reaching my goals, or even passing college. Well the pain in my head is getting to me so I will sign off. Thanks

Yes I have been to several neurologists

I feel your pain! I have a migraine this morning. Thought I'd drop by to see if there was anyone here that had tried something that I haven't. I can't take triptans. I am currently taking zanaflex once a day, klonipan at night, fioricet, loratab, toradol, just as needed. I don't take the loratab, or the toradol unless I can't handle the pain anymore, but honestly that doesn't even help much. I went to UVA Hospital in Charlottesville Va back in Sept 2010 for DHE protocal treatments but that was short lived, and only last about a week.

I am currently trying to get botox injections, but my insurance doesn't want to cover it. I have also contacted a Dr. Blake and Dr. Perry in Houston Tx about having migraine surgery, but I don't know for sure that I'd be a candidate. That is my last resort though, and not sure insurance would cover that either. It's a battle everyday! I suffer chronic intractable migraines.

Best of luck to you all!

Mercyme

Hi mercyme,

That sounds really rough. I'm sorry to hear you're in so much pain. I see you're on a bunch of pain killers and abortive medications. I would guess you have but I'm going to ask, have you tried preventative medications (TCA's, AED's, Beta Blockers, calcium channel blockers, SNRI's, NMDA receptor antagonists, etc.)?

Have you ruled out food triggers? I've always wondered if some of the epilepsy diets would be beneficial for some migraineurs (ketogenic, GARD, etc.). Something to ask your headache specialist I guess.

Have you exhausted the supplement route (petadolex, b2, magnesium, feverfew, coq10, black cohosh, etc.)?

I hope you're botox gets approved! The quality of the practitioner is VERY important (or so i've been told). Get someone who has a lot of experience giving it for migraine.

By surgery, do you mean implantation of Vagus Nerve Stimulator or a TENS unit?

Post Edited (EvilFluorescents) : 1/28/2011 11:24:19 PM (GMT-7)

EvilFluorescents said...
Neurologists and headache specialists aren't even in the same ballpark. Usually headache specialist (at Headache Clinics or Centers) are much more knowledgable about migraine, chronic daily headache and neurolgias (trigeminal and occipital).

I have also been to headache specialists. I am currently going to childs mercy in KC. They have a headache specialist sector.

I will try the larger better known clinic. I also will try the sunglasses. Topomax
never worked for me. I've never tried benzo, sounds dangerous though. Traveling
Is another thing that brings on the nausea and migraines after an extended period. I think at the possibility of finding help I will be able to manage though. I hope we find some relief. Thanks

No one knows until they have experienced waking up daily with headaches, being assaulted with them out of nowhere or awoken by them in the middle of the night... No doctor will ever help us... Face it... Right now, I live by 20 minute sessions... Not day to day... 

I have all the drugs everyone mentions in the thread... for me, only Toradol injections and Phenergan or Reglan will generally fix them... I've gone through several neurologists - 4 - in the last 3 months... They do not care, understand, etc. I wish this all upon them and for so long I had said, I wouldn't wish this upon anyone... 41 years old and just about in a living hell... I've done a ton of research...

I'm going to try this stuff I found on amazon.com - Migrainal or something like that... they have several pills that they sell that have magnesium, riboflavin, feverfew, etc. in them - and claim they will help... But, I'm so sick and tired of people blaming it on food or drink - it's stress, it's the weather changing, it's being over-tired because we've been miserable for so long we need to catch up on our sleep we've lost... I look forward to the end of this life, because it's not much of a life when everyone thinks you cancel plans or fake headaches - - if only they had even a taste of one!! They'd be singing a different tune... For now, it's ice packs, drugs, dark sunglasses, kissing the porcelain and living like a vampire... it's 6:32pm, the pressure in the air has gone down, a bit of relief is coming on, but I know that when I lay down tonight - the throbbing will start right up and by morning I will be wishing for death, rocking back and forth, screaming, crying, and then of course feeling bad that people around me are having to deal with me... I've had this headache since Feb 10th and it's now March 8th...

The doctors probably did bring this on with all their experimental drugs - from midrin to imitrex to topomax to tramadol - the tension in my jaw, back & neck - and the feeling of my eyeballs ready to explode out of my head - - makes me think - - *** did I do to deserve this? If only we could give criminals migraines, that's what would stop them in their tracks!

Best wishes to all of you - remember, if you like black licorice, you're lucky, eat it - it helps and ginger helps - stay away from orange sodas, white wines and make sure that ornamental onion plant is no where near your house... When you start to smell what your neighbor is making food wise - or you smell fresh tar/asphalt - take your medication ASAP... When you smell the garbage disposal, or trash like smell in the kitchen and everyone says they just emptied it... Realize, you have to do something quick... the only thing I have found that takes the majority of pain away is destressing, kayaking (moves the upper body in the best way) and staying in a climate that does not change drastically - once it goes either way 8-9 degrees... We're all S.O.L. ~

Try not to clench your teeth... Take your contacts out - and know there is someone else out there - that knows exactly what you're going through - all too well...