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Posted By : EE - 1/3/2006 3:19 PM

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....


Posted By : philski - 1/3/2006 3:38 PM
Hey man I know how you feel. I'm only 23 and I've been having migraines since I was a kid.

Its good that you are seeing a neurologist. Here's a hint. Aggregate as much information as you can before you see him. Hopefully if you walk in there with some good compiled information they will take you seriously and realise you aren't just playing them for meds.

The only abortive medication that has worked for me is Imitrex the injection. The pills and the nasal spray don't do jack. Relpax/Maxalt/etc. same thing. The needle works wonders, it'll abort the headache in a half hour and clear my head for a good 2-3 days if I'm lucky. Insurance pays for 4 injections a month. 8-12 days per month I know I can clear my head.

Ask about that if you haven't tried it yet. Same drug as the pill and nasal spray but again, both of those had a 0% success rate for me but the injection still worked. Just something about the delivery method that worked right. Are you taking a daily preventative?

good luck. Again, do some research and walk in there with some knowlege and they should take you seriously.

Posted By : EE - 1/3/2006 3:43 PM

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!


Posted By : Nicky (coquitlam55) - 1/3/2006 8:06 PM

Hi EE,

Welcome! I'm sorry to hear about the pain you're in and the trouble you're having find help. You're headed in the right direction going to see a neurologist.

Philski is right about Triptan medications, they can work well. A neurologist can probably write you a letter to ask your insurance company to cover more than the 6 Relplax allowed per month.

I take Toradol as well and find that sometimes taken with Tylenol they work better - but be careful of rebound headaches with Tylenol. I also find taking Gravol or Drammamine with Toradol helps me sleep and relax so the Toradol can work.

A good relationship with a neurologist has been the key for me. S/he can help you develop a pain management plan. It sounds like you really need to be on a preventative medication. There are some good ones out there with some good results.

I'm sorry that you've been labelled as a drug addict. I had to wean off pain killers myself. I know the feeling. I wouldn't take pain killers unless I had a headache and then, what do you do when you are off the pain killers and still have the headaches.

Hang on. There is hope. Have faith in your neurologist. If the first neurologist doesn't help, find another one. That's the way to find relief.


Nicky
 
Fall seven times, stand up eight.
                 --Japanese proverb


Posted By : JenMcD - 1/4/2006 6:15 AM
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


Dx: BPII (and everything that comes along with it), Chronic Migraines
Current Rx: Lamictal, Paxil, Lyrica, Seroquel (prn), Xanax (prn), NuvaRing
Past Rx: Prozac, Paxil/CR, Lexapro, Cymbalta, Ambien, Wellbutrin XL, Effexor/XR, Topamax, Neurontin, Trazadone, Klonopin, array of triptans (allergic) and lots of pain meds


Posted By : EE - 1/4/2006 10:19 PM

Thank you very much for keeping me in your prayers. I really do appreciate it. I feel like this is the only place I can actually relate to anyone! Most people think I am so crazy. I can't stand being treated so awful by doctors. I have actually given up on doctors. I am going to give this new neurologist a chance in February. I am hoping he can help, because if he doesn't, I am totally done with doctors. I have found them to be worthless and discouraging. I will keep you in my prayers also. No one should have to live like this....

 

EE


Posted By : JenMcD - 1/5/2006 7:27 AM
Hi EE -

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

-Jen


Dx: BPII (and everything that comes along with it), Chronic Migraines
Current Rx: Lamictal, Paxil, Lyrica, Seroquel (prn), Xanax (prn), NuvaRing
Past Rx: Prozac, Paxil/CR, Lexapro, Cymbalta, Ambien, Wellbutrin XL, Effexor/XR, Topamax, Neurontin, Trazadone, Klonopin, array of triptans (allergic) and lots of pain meds


Posted By : crazyhagirl - 9/12/2008 4:32 PM
I feel your pain. I started having migraines and chronic daily headaches about 3 years ago. I had a large pituitary tumor that bleed. I never got HA's before.
After the surgery I stated having HA's on the top of my head. They progressively got worse. After many ER visits, I went to a neurologist. I was so frustrated because every DR I saw, said nobody gets HA's after the type of surgery you had. And yes I know I was labeled as a drug seeker. My neurologist was very nice and seemed to really want to treat my pain. After a year of trying different antidepressants, anti-siezure meds, nothing seemed to work. Except norco, and eventually Morphine IR. I hit rock bottom; I felt so helpless; My body started to get dependent on these drugs.
Finally I went to a wonderful ENT doctor as a last resort to see if he could find something in my sinuses.
He took one look at me and my history, and said "your not going to like what I'm going to tell you, but you have analgesic rebound headaches. I cried, he said "we as physicians did this to you, it is not your fault.

He referred me to the best Headache treatment center in the country. The Diamond Headache Clinic, in Chicago, Illinois. They got me off all narcotics.
They saved me. I still get headaches, but not as often and not as intense.

Posted By : Jenbug731 - 9/12/2008 7:01 PM
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


Chronic Daily Headaches/Migrains

Meds-Keppra 1000mg/day, Imitrex, Relpax


Posted By : afveteran - 9/13/2008 2:06 AM
Hello everyone,

I just stumbled upon this forum as I was initially seeking medication information. I am sorry to see that there are other individuals who suffer daily chronic migraines, but I also felt a bit relieved that I am not the only one.

I wish I could go into a long detailed account of my story but the sharp throbbing pain keeps me from wanting to go any further than what I am. I do want to say that I am glad I found this forum and hope to type my story another time. I'm currently taking a regimented and daily supply of prescriptions medication, which includes morphine, topamax, and now cymbalta. I am getting off of Lyrica as that hasn't proved to be effective these past several months...my neurologist just took me off of yesterday.

I am sorry to see that others suffer with this disability as it is one often minimized and discriminated against, I have found. I am sure every individual who suffers with this has their own story of being minimized or discriminated against in some way or fashion...be it by a doctor, an employer, a family member or friend, or someone who just doesn't understand or is ignorant to the severity of the condition. I had a neurologist once tell me that "the only people who truly understand migraines are the migraine sufferers themselves, family members or friends that have been fortunate (or unfortunate) enough to be around you at the time you have gravely suffered, or the specialists who study them. Anyone else may not fully understand the complexities and severities of them." I've always found that to be true.

Take care and I hope to communicate with everyone on here at another time, perhaps in better circumstances when I'm feeling a little better. May we all find a little relief down the line.

Posted By : givenup - 9/13/2008 5:40 PM
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

Posted By : Jenbug731 - 9/15/2008 5:23 PM
Hey Ashley , Yes the calcium and magnesium is one pill. Its called "Calcium citrate plus magnesium" i got it from Wallgreens. They are 500 mg pills, and the doc said to take between 1000-1500mg a day...i usually forget at lunch so i take 1000mg. (one in the AM and one in the PM) The B2 is a separate pill (also known as riboflavin) you have to get that from a vitamin store or an herbal type store. I take 200mg of that. Those doses were recommended by the doctor. I take the 200mg of B2 in the morning. Its seemed to have been working ...i've been feeling a lot better lately. Hope this helps!!


Chronic Daily Headaches/Migraines

Meds-Keppra 1000mg/day, Calcium with Magnesium 1000mg/day, Vitamin B2 200mg/day, Imitrex, Relpax, Maxalt


Posted By : Gonzo23 - 1/27/2011 2:25 PM
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

Posted By : EvilFluorescents - 1/27/2011 6:54 PM
Have you been to a headache specialist? If not, this would be a good step to take.

Posted By : Gonzo23 - 1/27/2011 7:11 PM
Yes I have been to several neurologists

Posted By : EvilFluorescents - 1/27/2011 7:28 PM
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).

Posted By : mercyme - 1/28/2011 7:43 AM
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

Posted By : Annuk - 1/28/2011 5:24 PM
Hi deathofmigraine,

I would refer you to the Forum Rule about advertising and point out that you cannot have your website as a signature. Please remove it and if you want people to contact you, they can do that via email, but you need to have your email address available in your profile, please do not post it or put it in your signature.

Thank you for your co-operation

Ann
Co-Moderator of the Migraine/Headache Forum

DX: Hemicrania Continua, Chronic Migraine, IBS, Allergic Rhinitis and Heart Murmur

Meds: Imigran Injections, High Flow Oxygen, Mebeverine, Lansoprazole, Nasonex and Clarityn

Posted By : EvilFluorescents - 1/29/2011 12:19 AM
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)


Posted By : EvilFluorescents - 1/29/2011 12:35 AM
New thought (maybe stupid thought)... have you ruled out MOH? You're on some pretty impressive pain killers.

Posted By : Gonzo23 - 2/7/2011 10:05 PM
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.

Posted By : EvilFluorescents - 2/7/2011 11:34 PM
That sounds like a very frustrating situation to be in. I'm sorry you're in so much pain.

Are you able to travel? It may be time to go to one of the large well known headache centers:

Thomas Jefferson Headache Center (Philadelphia)
Diamond Headache Center (Chicago)
New England Headache Center (Connecticut)
MNHI (Michigan)

I can very much relate to the fluorescent lighting issue. I've heard many have success wearing FL-41 tinted sunglasses (it's a particular pinkish tint). It didn't work for me, but I know people who's lives it has changed. I've also heard blue tinted sunglasses suggested. As far as meds go, the only thing that I have heard of working really well is Topamax (I'm going to try that next). Benzo's (eg klonopin, xanax) work incredibly well, but because they're benzo's it is not a long term solution. They are addicting and can lead to long-term deficits.

Posted By : Gonzo23 - 2/8/2011 6:11 AM
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

Posted By : EvilFluorescents - 2/8/2011 10:02 AM
One more thing for the sunglasses that I forgot to mention. It might be worth it to get a pair of frames that completely block out light that comes from the sides, bottom and top.

I use wileyx brand (there may be other brands that do the same). The particular frames have a soft foam that bridges the space between your face and the frames. I would also recommend getting the lenses polarized (helps to block out the glare). Maybe UV protection too. I hope these work for you!

As far as nausea goes with traveling, you can ask your doctor for anti-nausea pills. I know some people have trouble keeping the tablet down (it's hard when you're not feeling well) and they just take a suppository form of the drug. I know it's not fun, but nausea is less fun.

I agree, I hope we both find relief (and soon!).

Best of Luck!

Posted By : MigraineHell - 3/8/2011 8:41 PM
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...  

Posted By : EvilFluorescents - 3/8/2011 11:52 PM
Hi MH,

That sounds just plain terrible. I'm sorry your having such a rough run. Month+ migraines are the absolute worst!

Your absolutely right, many neurologists don't really understand complex migraine. And there are precious few who "comprehend" the level of suffering they inflict. There are those fantastic few who do... and they are absolutely worth traveling to. Have you been to any of the large reputable migraine clinics (Diamond, Jefferson, ect.)?

I wish you all the best with the migrainal product. I've heard glowing reviews from my headache specialist about it. The trick with the stuff is to not give up too early. Like all of the herbals/vitamins, if it works for you, it can take up to a few months to kick in. The upside... very few and generally insignificant side effects.

Good luck and best wishes.

Posted By : EvilFluorescents - 3/9/2011 11:59 PM
Hi MH,

Not sure where your other post went, but I think I remember you mentioning something about going on a cruise to Central America and the migraines disappearing? It's really interesting that you mentioned that. When I went to (northern) south america my migraines disappeared as well. For me, the lighting conditions were much better (I'm pretty photosensitive).

It's also interesting that you mentioned the swimming and snorkeling. Whenever I'm around ocean water my migraine frequency seems to lesson as well. NaCl and water does not have the same effect. Ohhh, the weird nuances of migraine...

You mentioned that you are in California. If you're near the Bay Area UCSF is supposed to have a very good, upstart headache clinic. Last I checked it was a six month waitlist, but hey... that's pretty standard for the better clinics anyway.

Posted By : MigraineHell - 3/10/2011 12:13 AM
Last night I tried something - and it worked... Benadryl... 1 pill - I actually woke up with almost no migraine... I feared I was getting one, so I hopped out of bed, started to do my shoulder & neck exercises... and went outside, to breathe fresh air, and I seemed to have escaped it for this 1 day...
 
I don't no where that post went either... ?
 
But yes, when I'm closer to the Equator - or near water - Sea Level - whether it be Hawaii, Tahiti, Honduras, etc. - I'm basically Migraine free... and I can eat anything, drink anything, and nothing gives me a headache...
 
Crazy, it's all weather/pressure related along with all the other stuff...
kayaking & snorkeling and just moving the upper body as much as possible, swimming, etc. Really helps the muscles and blood flow for me and it sounds like it does for you too...
 
I am not going to bother with any more doctors, studies, etc. unless I stumble upon them - I am on a major research hunt for the Migraineurs out there... I'm going to find my own way like I did last night - and use the drugs the way I think they work best for me... and as soon as I find the right combination, I'll gladly tell anyone suffering... There has to be an end - otherwise, I'll be looking for Kevorkian's book...
 
Because today even though I've had a light headache and almost started to get a migraine when the temperature went up 20+ degrees in a very short time... and the pressure built up in the air... I took another benadryl and granted, I fell asleep - but, the pain went from say a 1 to a 0 whereas usually each day is at a 10+ 
 
Try benadryl... I think it has to do with inflamation, it lessens it - I'm going to take one again tonight... It will be quite interesting if I wake up with a raging migraine or not -
 
I'm in So. Cal. -

Posted By : EvilFluorescents - 3/10/2011 1:12 AM
It's interesting that you mention the benadryl. I think I remember reading on an NDPH forum someone mentioning some type of anti-histamine helping their headaches (they use it daily).

Going from a 10+ to a 1 or 0, especially after a month long migraine is absolutely miraculous. I would be over the moon. Congrats!

Posted By : MigraineHell - 3/10/2011 1:19 AM
Thanks! Yes, I was quite surprised! I'm going to try it again tonight and if it works - there must be some truth to the whole anti-histamine, anti-swelling of the blood vessels, less irritation to the nerves, etc.

I'm hoping it works, but I'm on the verge of a migraine... my eyes are extremely sensitive to the light right now and I'm feeling the blood/throbbing behind my eyeballs and the ache at the back of my head/neck... and my jaw is tight -

So... Jacuzzi, not too hot - that makes it worse too... then the benadryl!!

;) If it works, I will be over the moon!!

Thank you!! So sweet ;)

Posted By : Bonitaluv - 3/10/2011 1:45 PM
Hello EE,
 
I really understand where you are comeing from,I have hemiplegic migraines.I have had daily pain since 2008..
 
about the pain medicine,it is true that you dont want to take norco,or any types of norcottics for a migraine..how ever that is easier said then done because you want something that will relieve that pain.. one bad thing about takeing norcottics they give you rebound headaches...
 
I was also reading thru and i didnt see any preventative medicine..
Your nuerologist is the person to see about migraines,so if you dont like the one you are seeing then seek another until you like them..
 
Im sorry that they are treating you wrong at the ER,and hospitals.Well that is alot of people with migraines..I have been ask the question "do i want a hit" because i was getting migraine cocktails along with deluated(a norcottic)and that is next to the moraphine(sorry if i spell the meds wrong)family.
 
The best thing for you to do is seek the neurologist and get your preventative meds and the abortive meds..sleep aides everything you need to help..
 
I truelly underastand because i deal with daily pain and 3-4 attacks a week..along with other symptoms like leftside paralysis and slurd speech due to the migraine..I have lost over 60 pounds from vomitting so much..You not alone it is a fight to get the things you need..
Good luck and will look out for more updates..

Posted By : Glacier - 3/10/2011 2:17 PM
 
 
 
When I have days like that, first thing I just resign myself to the fact that nothing else is going to take place that day except me IN the hot shower then laying on my bed with a heating pad on my head. Some people say cold helps them but I go with heat, 100%. Cold just makes me scream.

Posted By : MigraineHell - 3/10/2011 4:03 PM
** Try this... second night in a row I took just 1 Benadryl and did not wake up with a migraine... **
 
I cannot believe this... I do not have a headache. I do have sensitivity to the light, and my neck/shoulders/back aches and my jaw is very tight - and the weather has drastically changed throughout the night and into the day - so I should be in major pain right now...
 
I've actually not had any midrin, diazepam, pepcid, toradol injection, phenergan injection, vicodin, etc. in almost 2 days...
 
And I'm drinking Sunkist... and I'm eating a Salami & Cheese sandwich - go figure?
 
I did notice I smelled everything in the kitchen - from the vinegar, to the garbage disposal, and now my nose is getting stuffy - so I may not be out of the woods...
 
But, my point is... If I can get the medications the doctors have prescribed out of my system, and use over the counter benadryl - 1 pill - for awhile - to try and get out from under this Migraine Hell -  - there must be something to the anti-histamine involvement helping with relief? 
 
I'm certainly as stressed out as anyone could possibly be today... Major tension...
 
Just try the benadryl if you can - to see if it works for you...
 
I'm so done with the complicated cocktails prescribed by the neurologists - - it's just too much... As I watch Survivor - I think, I couldn't even go on that show - there would be no drugs if I got a migraine... But then I think, what did people do in the dark ages? I want to get away from the migraine drugs - if at all possible - but I have them, and will be refilling them for emergency use...
 
One thing I can't stand is that girl on the Excedrin Migraine commercial, I just saw it... I want to strangle her... If only she knew what a migraine was like... My gawd! 

Posted By : EvilFluorescents - 3/10/2011 4:36 PM
Congrats!

Just one word of caution... if you take the diazepam daily, that is definitely one that you are going to want to withdraw from slowly. It's a safety thing.

That's really fantastic that you've found something that's working so well for you!

Posted By : MigraineHell - 3/10/2011 4:54 PM
For some reason the diazepam does not bother me either way, I could take it or leave it - same with vicodin... I'm not "addicted" (Like I got to have it, or I want it or crave it... I just use them, because they are there, if they weren't I go to the Emergency Room... Expen$ive...) to any of these drugs - for example - if I do not get a headache now - say - until a week from now, or ? I will not take any of thos medications... Granted, I'll have some crazy dreams/nightmares... but - my thing, I just have to make sure if I do take any kind of medication, I have food - or pepcid and then some Tums or something for the acid indigestion...

I hear alot of people have trouble with the diazepam, or let's just say it - valium... I never took it until I broke my clavicle - the back, shoulder, neck spasms - it helped calm them down a bit - or calm me down enough to where I could deal with the pain, I just try to "breathe"...

I have a light headache... If everyday was like this - I'd have nothing to complain about... Because most everyday of the past 9 years has been spent with a full blown migraine, each month, the number of days with a migraine vs. without only going up!

I have cancer and migraines - migraines for me are worse than the cancer and the cancer is not cureable... so that gives you an idea of what I can deal with ~ I'd rather cure the migraines over the cancer.

I hope you have a migraine free day & night ~

Posted By : jenabelle - 1/5/2017 1:35 PM
Hi, I just started getting TONS of headaches in the last 3 months. They sometimes turn into (milder?) migraines. When I say milder, I mean that it hurts horribly on the left or in the center of my head, with places that hurt around my eyebrows, behind my eyes, and temples, and the only thing that helps is lying down or sleeping, in the dark. I did have a bad migraine once, maybe a month ago, with nausea and chills - that was awful. It feels like an illness and I feel drained after them. Previously I had milder migraines, usually around my period or if I got very excited or stressed, usually socially.

Now I'm getting these milder headaches that don't go away - they are there all the time, and sometimes get worse. I had one for 15 days straight, and since then, it seems like they return at the drop of a hat. I'm living in fear of them, and trying to prevent them. I've always been sensitive. My house burned down in a wildfire in August - that's when these daily headaches started. I have been staying in SF with my boyfriend and barely go out because of the headaches. The city overwhelms me anyway - I had been living reclusively and peacefully in the country, fixing the house that burned down. I've been trying not to worry.

I don't want to try prescription medications. Has anyone had any success with mineral supplements, or blood tests showing deficiencies, or (good) chiropractor adjustments? I noticed I was clenching my teeth and I'm fairly sure I've stopped, but it feels like something is off in my head physically, and possibly chemically. I even tried CBDs but the tincture I had had too much THC - so I spent the day feeling how my consciousness and body are one thing - I felt which muscles were tense, but it was like tripping. It helped, because I relaxed, and the headache did go away - but I couldn't live in that state! Perhaps strong pain killers would make me loopy, too, though.

Two months ago I saw my DNFT chiropractor a number of times - she made my jaw feel straight again and it stopped clicking. I was seeing her because I pinched a nerve in my sacrum a year ago. It took several sesssions, but my sacrum/tailbone are a lot better. I know the sacrum relates to the cranium in a strong way - perhaps seeing her again will help. I read on here that people took calcium magnesium and B2. I've been taking vitamins (Olly brand) and also magnesium. I'll add calcium - I've been wanting to anyway. I wonder if there's something else I can do - I'm scared of the western medical approach! If anyone has any advice about treating migraines or daily headaches naturally, or discovering their cause - please let me know!

Posted By : catika - 3/13/2017 2:43 PM
i saw all the comments are old, has anyone find out a relief for the daily headache/migraine?
i had try almost all medications without success, and seem many different neurologist, pain management docs and headache specialist. result waist of money and time.
please if any of you MigraineHell or any other one has found something that really help please tell me.

Posted By : Brian S. - 3/17/2017 11:35 AM
I have migraines almost every day, at least 20-25 days a month, and cant find anything to help prevent, or decrease the frequency of them. I would really appreciate any help or information I can get to tame these down as it is getting unbearable and I can't have any sort of life sitting at home waiting for the next migraine.

I have been told by doctors that my meds from chronic back pain for the last 13 years may be the cause but they are not sure as I mad migraines before but not as frequently. I recently started weaning off the narcotics to try to stop the headaches as I would rather have constant back pain than constant migraines and I don't know what else to do to decrease or stop them.

I have been tried all natural remedies I could find and have been prescribed many things for them with no avail. I heard good things about Botox for migraines so I tried it, I ended up with a continuous two week headache so I will never try that again. I recently started taking Migrelief as I have read many good comments about it online with no effects yet but it takes weeks to work i guess so I am continuing it.

Most of my migraines are mild and only last a couple hours, but sometimes they last for days or even weeks at a time. They are never mild enough to function well, or at all, while having an attack. Zomig and sleep when I get the aura works most of the time for mild to medium attacks, but I obviously can't take Zomig daily. I only take it medium pain attacks and try to get away with sleep alone for more mild migraines. Usually I wake without the headache. For severe attacks only Toradol injections at the doctor work, narcotics have never worked to alleviate migraines for me.

Post Edited (Brian S.) : 3/17/2017 11:39:49 AM (GMT-6)


Posted By : Beachbumgirl - 3/21/2017 2:04 PM
Hi everyone. I'm new here. Migraines for 20+ years.
1). See a migraine specialist
2). Be on preventative meds
3). Try not to take abortive meds > 2x a week. You can then get MOH.
4). If your present specialist isn't helping, move on.
There are many new treatments out there to try. We have to just keep trying. Not fun!! I face bad migraines on a daily basis. Seeing a new specialist this week.
I won't let them keep taking my life away like they have. 😡

I hope this helps some of you. Hugs.

Posted By : MMMIkee - 4/15/2017 1:32 PM
EE said...
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....


hey there. I also new a first-timer here. I don't suffer from the headache but a friend of mine does. so that is why I'm here. I read your post, and I would like to ask you, have you ever take any herbal medicine? I know that my friend use clear migraine, it's special capsuls and they help her in most cases. I know that it's quite expensive, so I can give you a discount she uses. There are many pills like this. I've read many feedbacks and there is no general opinion regarding this one. some people say it's great and helpful, but it didn't work for the others. so I don't know. Just wanted to help.
take care.

Post Edited (MMMIkee) : 4/15/2017 1:36:16 PM (GMT-6)


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