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Posted 10/29/2009 2:42 AM (GMT 0)
eyes  Hi

 

I live in a night mare everyday mild headaches haunt me.  Then when the weather takes a switch my head feels like someone is hacking at my brain with a sharp pointy knife repeatedly and just when the pain feels like it has slowed then they come at me again.  The tears flow freely and the hits keep coming.

I come to you once again with an unresolved problem.  I suffer from headaches that I have had multiple diagnosis for and each has its own medication or resolve and nothing has worked for me.  My latest is sinus surgery and as of this week nothing seems new.  It has been 4 weeks since the surgery and this whole week I have been in tears hours on end.  I have had numerous neurologists and no resolve.  I have done all the test you can think of from MRI CT scan even been to the Mayo clinic which for me was a joke.  This has all been haunting me for 7 years and I am lost of what I am to do next.  I am trying to know if I have to plan to have this for the rest of my life.  I worry about my job currently they have me on random FMLA that covers me the days I have to stay home for the headaches. shakehead

 

 

                                                                                                                KIMMERS

 

 

Posted 10/29/2009 8:02 PM (GMT 0)
Kimmers,

I've had a constant headache for just short of 7 years now too so I know what you're going through. There's a lot I could say but I don't have a lot of time right now. Personally I don't think that I'll have this pain for the rest of my life despite th fact that I've exhausted every treatment option. My life changed a lot when the headaches started and it's changed a lot at other times in my life so I believe that things will change eventually. But it's still very important to learn to live with your condition. You don't ave to accept that you'll be like this forever but you do need to accept that you're like this now and probably will be for the near future and adapt your life to make it the best that it can be under the circumstances. You may not be able to do all of the things that you want to but it's important to learn to do as much as you can.

Good luck,

Ben
Posted 10/30/2009 5:30 AM (GMT 0)
Hey kimmers,
I get stabbing pain in my head and just mild headaches and pain somtimes the last 1 second somtimes 5 mins somtimes an hour...they are completely random, every day, all day long. I'm trying to get through the anxiety that it has created...which make things worse i have searched for answers but i can't find anything... LIke you have had an mri and an mra, blood tests. I don't know what I am doing or have done that could cause this to happen to me..but hang in there I hate it as much as you...i know it is hard but honestly the only thing that seems to help me is daily exercise brisk walking and stretching...it doesn't get rid of the headaches completely but it really does help. the only other advice that i have found usefull is that with chronic pain, once the victim becomes depressed and hopeless, it becomes even harder to get rid of...no matter how hard it is you need to focus your energy and thoughts on things you love and care about. Fill your life things you love, family, friends, pets. these are the things that help me.
hope you feel better
Posted 10/31/2009 2:44 AM (GMT 0)
Wow thanks guys for your response I have always known and feared that there was probably people out there that suffered like me. I hurt something awful lately and this is only the beginning lol I told my latest Neurologist he had till Oct before this goes on hiatis. He has not accomplished this. Today I called in tears almost telling his nurse my problem and he saddly for me told me to see my primary doc for acute pain. I am not meaning to whine I am just venting not to mention that writing you guys is keeping my mind off the excrutiating pain. I have to agree with you that I am trying not to let this bring me down and I still do most of the things I love. This weekend we are going to a bowling tournament I hope we do well. As for exercise I have a hard time doing that because my head starts to hurt the more I exercise. I have to do it in small incraments....I hope that this finds you in some relief and I hope to talk soon...Thanks for the pep talk...
Posted 10/31/2009 4:18 PM (GMT 0)
Everything to gain and nothing to lose: google "EFT" and download simple free way to end your headaches. May require you to several times to be rid of headache. Just do it :) :-)
Posted 11/1/2009 11:53 PM (GMT 0)
Google PFO and migraines! I was diagnosed with this after suffering with daily migraines for 15 years. I had surgey to repair it 9/29/09 and have been migraine free. I too had seen probably 7-8 neurologists with no relief. My internal medicine Dr sent me to a cardiologist and they did a TEE with bubble test (google this too) and I had a PFO which was allowing unoxygenated blood to get to the head causing the severe migraines. I wish more people knew about this. Please google and perhaps you can find enough info to ask your Dr for this test! I did and haven't had a migraine since!
Posted 11/1/2009 11:54 PM (GMT 0)
Google PFO and migraines! I was diagnosed with this after suffering with daily migraines for 15 years. I had surgey to repair it 9/29/09 and have been migraine free. I too had seen probably 7-8 neurologists with no relief. My internal medicine Dr sent me to a cardiologist and they did a TEE with bubble test (google this too) and I had a PFO which was allowing unoxygenated blood to get to the head causing the severe migraines. I wish more people knew about this. Please google and perhaps you can find enough info to ask your Dr for this test! I did and haven't had a migraine since!
Posted 11/2/2009 12:56 PM (GMT 0)
Hi All-

I joined this forum simply for this post.

I suffered 24/7 headache for 10 months. I found the cause after multiple hospilizations (MHNI and loads of local places). I saw over 30 doctors. I knew in my heart what the problem was, but couldn't find the a doctor to listen.  I am now 100% headpain free.

I was dx with loads of different things at different times by different doctors: psuedo tumor cerebri, migraines, NDPH, starting Fibro, possible PFO, epidural leak... you name it, I was given the dx for it.

Turns out...  I have lyme disease with Bartonella.  Bartonella and Babesia are the two co-infections of lyme that primarily causes headaches.

This could be a really long post, but I won't do that unless anyone wants more information.  Let me just say that of the 3 people I stayed in contact with from MHNI, all 3 on my instance got tested for lyme, and all 3 tested POSITIVE.  What does that tell you?

I have also had many from another migraine site test and they too have tested positive.

Please ask me anything you want. I'll answer to the best of my knowledge.  If you have been tested, please know that the labs your doctor would have used are 100% unreliable.  And that any bands means exposure and possible infection. If they have told you are not positive, ask for the tests...

Thanks for reading.

Posted 11/4/2009 3:32 AM (GMT 0)

Hi again

Well I have researched all this information thanks very much.  I am not due to see my Dr. for awhile not that he will want to I am sure I  believe I may be becoming a royal pain in his behind.  Today I was finally given some new meds after crying two days in a row over the phone.  I am not sure if it is going to help it hasn't in the last few hours but am hoping that it has to build up in your system.  I am exhausted after all the crying. 

I am sorry to hear you guys have suffered like me but am glad to hear that some of you have found a solution and I am praying that answers will come soon for me.

You are all providing me with some good information please keep them coming I appreciate it all.

confused Has any of your symptoms included extreme elevation in blood pressure when the pain is elevated.  I have been as high as 192/106.  I don't have any nausea, light sensitivity, sound sensitivity....

Kimmers

Posted 11/4/2009 5:34 PM (GMT 0)
To all migraine sufferers: don't snear at EFT; try it, you might benefit! It's a simple combo of acupressure & positive thots you do yourself.

In 45 years of Naturopathic Medicine and 32 years of Auriculotherapy, I have found a great number of migraine sufferers have an allergy. And when there's one allergy, seems there's a hundred https://www.healingwell.com/community/emoticons/smhair.gif.

You can almost bet the foods the love most are a major problem. Try going without them for 3 days & notice how you feel; going 30 days without them and you'll be a new person. Where food allergies ARE a problem, add Lactobacillus acidophilus (health stores): 1 to 2 billion live organisms daily and add fiber: 3 to 5 gms at bedtime. You must be willing to stop whatever your allergenic
Posted 11/11/2009 5:28 AM (GMT 0)
Kay I am so appreciative of what you all are bringing to my post but I am faced with another problem...My Neurologist seems to be giving up on me....I have called to tell him that I am in a lot of pain one this weekend put me into the ER and the other pain is close....I am tired I can't sleep and when I do I wake crying because it hurts so bad.....I am at a loss of where to go from here without anyone who will listen.... shakehead Kimmers
Posted 11/11/2009 4:26 PM (GMT 0)

ramilin said...
Hi All-


I joined this forum simply for this post.



I suffered 24/7 headache for 10 months. I found the cause after multiple hospilizations (MHNI and loads of local places). I saw over 30 doctors. I knew in my heart what the problem was, but couldn't find the a doctor to listen. I am now 100% headpain free.



I was dx with loads of different things at different times by different doctors: psuedo tumor cerebri, migraines, NDPH, starting Fibro, possible PFO, epidural leak... you name it, I was given the dx for it.



Turns out... I have lyme disease with Bartonella. Bartonella and Babesia are the two co-infections of lyme that primarily causes headaches.



This could be a really long post, but I won't do that unless anyone wants more information. Let me just say that of the 3 people I stayed in contact with from MHNI, all 3 on my instance got tested for lyme, and all 3 tested POSITIVE. What does that tell you?



I have also had many from another migraine site test and they too have tested positive.



Please ask me anything you want. I'll answer to the best of my knowledge. If you have been tested, please know that the labs your doctor would have used are 100% unreliable. And that any bands means exposure and possible infection. If they have told you are not positive, ask for the tests...



Thanks for reading.

I agree that it's important to be aware of the possibility of lyme disease but I have to express great surprise that you saw many neurologists, including at MHNI, and none of them ordered a blood panel to test for lyme and other diseases, metabolic and immune problems, etc. I've been working on an unbreakable headache for nearly seven years now so I've tried nearly everything but lyme disease was one of the very first things that I was tested for.

Certainly everybody should be sure that their doctors do not overlook this possibility but it's been my experience that most headache sufferers who've been treated for an substantive period of time have been thoroughly screened for such simple causes.

And "nomoremigraines" and "dochow", I appreciate your input and mean no offense, but do you have to post (respectively) about PFO closure and EFT in every thread? We've seen your information and appreciate it.

Ben
Posted 11/11/2009 4:26 PM (GMT 0)

ramilin said...
Hi All-


I joined this forum simply for this post.



I suffered 24/7 headache for 10 months. I found the cause after multiple hospilizations (MHNI and loads of local places). I saw over 30 doctors. I knew in my heart what the problem was, but couldn't find the a doctor to listen. I am now 100% headpain free.



I was dx with loads of different things at different times by different doctors: psuedo tumor cerebri, migraines, NDPH, starting Fibro, possible PFO, epidural leak... you name it, I was given the dx for it.



Turns out... I have lyme disease with Bartonella. Bartonella and Babesia are the two co-infections of lyme that primarily causes headaches.



This could be a really long post, but I won't do that unless anyone wants more information. Let me just say that of the 3 people I stayed in contact with from MHNI, all 3 on my instance got tested for lyme, and all 3 tested POSITIVE. What does that tell you?



I have also had many from another migraine site test and they too have tested positive.



Please ask me anything you want. I'll answer to the best of my knowledge. If you have been tested, please know that the labs your doctor would have used are 100% unreliable. And that any bands means exposure and possible infection. If they have told you are not positive, ask for the tests...



Thanks for reading.

I agree that it's important to be aware of the possibility of lyme disease but I have to express great surprise that you saw many neurologists, including at MHNI, and none of them ordered a blood panel to test for lyme and other diseases, metabolic and immune problems, etc. I've been working on an unbreakable headache for nearly seven years now so I've tried nearly everything, and lyme disease was one of the very first things that I was tested for.

Certainly everybody should be sure that their doctors do not overlook this possibility but it's been my experience that most headache sufferers who've been treated for any substantive period of time have been thoroughly screened for such simple causes.

And "nomoremigraines" and "dochow", I appreciate your input and mean no offense, but do you have to post (respectively) about PFO closure and EFT in every thread? We've seen your information and appreciate it.

Ben
Posted 11/17/2009 2:06 PM (GMT 0)

"I agree that it's important to be aware of the possibility of lyme disease but I have to express great surprise that you saw many neurologists, including at MHNI, and none of them ordered a blood panel to test for lyme and other diseases, metabolic and immune problems, etc. I've been working on an unbreakable headache for nearly seven years now so I've tried nearly everything, and lyme disease was one of the very first things that I was tested for. "

They did.  Over and over and over again.  But what I didn't know, because I wasn't educated....

THEY NEVER USED THE RIGHT TEST. And if you have been tested, I can 100% guarantee that they did not use the right test on you either.

Also, they will tell you the test is negative, even if bands show, if it does not meet the CDC criteria.  However, any bands on the test means further testing needs to be done. BUT... the blot and elisa test should not be used to diagnose lyme.  For  more reliable results, a lab called Igenex.

Please do research on how inaccurate the testing is, why it is inaccurate and why doctors won't test for lyme the right way.  Also watch the trailers for Under our Skin..its a documentary about lyme and the current buzz is it might get nominated for an Oscar.

I have a lot to share about my experience. you can check me out on mdjunction..do a search for my name. read my profile, look at my first diary entry.

I can tell you have I have nothing to sell, I have nothing to gain by telling you all or anyone else for that matter about lyme disease. However, I was in all of your spots. I suffered with 24/7 headache. No medicine worked, I was in MHNI, as well as many local hospitals trying any and all sorts of medicines. Nothing worked.  I choose to do research and found out myself I had lyme. I knew I had it, just needed to find a doctor that would listen.  I am now 100% headpain free.  Yes.. I don't have a headache every day.  I never imagined I would be able to live pain free again. But, I am and it's been wonderful.

Also, I stayed friends with 3 people from my 16 day stay at MHNI -

2 year headache lives in IL

5 year headache lives in CT

7 year headache lives in TX

Upon my constant badgering....listened, got tested and ALL THREE HAVE LYME DISEASE AND CO-INFECTIONS.  I have individual stories about them as well and am happy to share each the highlights.

Also know that if you are a woman, lyme does transfer to the fetus. My youngest son has lyme disease (he's currently 17 months old) as well as a co-infection called Bartonella.  He only has absent seizures as his symptom.  However, many children with lyme (undx) have ADD/ADHD, autism, depression/anxiety,etc.

Ask me anything. Join MDjunction...send me messages.  Several on the NDPH forum on MDjunction have tested positive after listening to my story and me encouraging them along. Some are open about it, some aren't (for various reasons).

As a matter of fact, I just had a 3 week discussion with a man about his 16 year old daughter and that I knew she had lyme. She's had a headache for just a few months. He fought the idea, didn't want to hear it.  Whatever the doctors said is the words of God. I finally convinced him to get the actual lyme report from the hospital (because he never saw it, the neuro told him it was negative).  Well, a week later, I get an email, with the actual report attached and right there "lyme antibody test: Positive".  Yep, they have now consulted a lyme literate doctor, who inturn has informed him that his daughter does have lyme and a co-infection. 

So, please don't discount the idea simply because your doctor told you it waws negative. Do the research. Learn why they tell you this. Read up on the lawsuit against the IDSA for having guidelines that are junk (these are the guidelines your doctors use).  Read people's stories about the daily suffering and the years of not getting a dx.

I wish everyone the best of luck finding answers. I will answer any questions you have, so please ask them. 


 

Posted 11/17/2009 2:08 PM (GMT 0)
"......of time have been thoroughly screened for such simple causes."

If only lyme was a simple cause.....
Posted 11/18/2009 3:59 AM (GMT 0)
Hi,

I can relate to you and feel sorry for you. I have been battling migraines for 20 years and have tried everything. I currently go to Cleveland Clinic for botox injections. They have helped but still I suffer many days. My most relief is taking a darvecet, axert, applying head-on on my forehead and taking Lunesta to help me sleep it off. Many days when I work and have a bad migraine I take a little piece of the Lunesta and it seems to help me alot. If I can help anyone with any relief it would be so nice. I have children and there were many days when I could not even stand up for days. Goodluck!

Posted 11/21/2009 4:01 AM (GMT 0)
Hi

 

Well seeing the Doctor is still impossible.  Saddly my life just flipped upside down and inside out.  Here is the story I had sinus surgery and my boss pulls me aside and tells me to take FMLA (family medical leave act).  I look into it and it so turned out that there was two kinds of FMLA one is full and the other was intermittent and since my headaches aren't always bad and prevent me from working I took the intermittent.  Following my two weeks of leave from surgery I came back to work and I was able to go to work Partial to full days off and on. Then the following week my head was so bad that I took two full days of FMLA and left early other days.  Well needless to say I used one more Monday and then was sure I could work Tuesday but recieved a call that my boss wanted a meeting with me.  I went in for the meeting and my boss and human resources basically told me that I have to take my full FMLA reguardless of how I felt.  They did offer me a different job I could take and not have to be on FMLA.  I have serious issues that this could be illegal but am facing a problem with my income is nothing once my Paid time off is used up.  So not only did they force me out of my job oh yah I could come back by Jan 18th but have to be 100% better or you guessed it I am out.  It is a lose lose situation for me.  I am sad that these Headaches are ruining everything.  My last three jobs I have under the covers been let go due to them.  The bosses are quick to word it so they can't be in trouble. I still don't have a cure or an answer and my doctor is being difficult...I am looking into the Cardiologist next.  Best wishes to you all hope your life is doing better then mine....Kimmers

Posted 11/21/2009 1:09 PM (GMT 0)
Hi,

I am sorry to hear of your situation and even more sorry that your job can do this to you and think it's ok. If I were you I would go to the labor board and file your complaint. It's free and I have done it before with a different situation but won the case and all I had to do was file, they investigate, then I met the Board at McDonalds, and heard back in 2 weeks that I'd be getting a ck in the mail for their wrong doing. I can help you if you need.

The only thing that I would tell you now is to try taking 1 tylenol PM when you get a headache. It use to work for me but haven't taken 1 in a while bc I take Lunesta and you shouln't take both.

For me, it seems to be s-thing in it that relaxes you and your brain-after I wake up, I feel a whole lot better. I am no doctor but my experience is what I go by. Let me know if this helps--Lots of luck

migrainemisery 

Posted 11/21/2009 7:56 PM (GMT 0)
Ramilin--

I will look into that further. I am quite aware of how unreliable these screens can be but, since I don't have any symptoms that specifically indicate lyme, didn't see any reason to look further into it. It just seemed (or seems?) unlikely to me that top neurologists in the best headache clinics would improperly screen for lyme disease, though I'm willing to accept the possibility. Honestly, I've just heard a lot of people saying that they found this one thing to try that ended up just stopping headaches that had lasted for years. Over seven years I've learned time and time again that there is no simple fix (or, at least, I've tried a ton of them and none have worked).

But I'd like to know more about making sure that my screens weren't read as false-negative. I certainly recognize that doctors are very much fallible--and for that reason I expect that, if there's important information about lyme or associated infections in my lab results, my neurologist probably won't know what to look for. The Jefferson Headache Center does a fantastic job treating headache patients. But therein also lies the problem. They treat patients, using a wide array of resources that have been proven to work for a lot of people. But when they've exhausted their treatment options they simply don't know what to do. It's because they're trained (quite well) in treating headaches, but aren't too proficient in diagnosing or understanding headaches. As a clinic with a very large patient base they focus on doing what will help the greatest number of people and are great at that. But for the outliers they have little to offer.

So thanks for the information and I apologize for my reflex skepticism. After 7 years of negative results it's hard to commit much hope to another longshot. But that doesn't mean that I won't try.

Ben
Posted 11/21/2009 10:53 PM (GMT 0)
Thanks Migrainmisery
I would like to know more currently I have applied for that job that they are basically giving me my ultimatum of FMLA or take this perminite position that come to find out is only part time. I have applied because I need an income now soon my Paid time off is going to run out. I am in the process of looking at other hospitals for a new job but in the mean time am applying at this one. Thanks for your thoughtfullness in my worries it truly means a lot to me. I will give the tylenol pm a try right now the head is killing me and I tried to take a warm shower but didn't have any luck... Talk to you soon.
Kimmers
Posted 11/21/2009 11:08 PM (GMT 0)
Hi Kimmers,
I think if you googled labor board -you could ask them if it is legal for them to put you at part time now bc to me, that is discrimination. If it is legal, then you should be able to collect $ for being disabled!
Goodluck with the Ty PM--I have had a migraine all day and nothing is working! I wish they could find out why we are all suffering so bad--if only they knew the pain!
Try to have a good night and I'll ck in tomorrow.
migrainemisery
Posted 11/22/2009 12:03 AM (GMT 0)
Migrainemisery
You have a good night as well and I hope that you feel better soon.
Posted 11/28/2009 12:32 AM (GMT 0)
Hi Kimmers,

Hope you had a Happy Thanksgiving, I did-and cant believe that I didn't have a headache. What is new with you? Any relief lately?

I am hoping.... Let me know when you can.

Thanks,

migrainemisery

Posted Today 10:45 PM (GMT 0)
Concerned

Life is killing me these days sitting at home the weather is cold my work won't let me come to work.  I am tired of it all.  I need advise do I fight for myself or do I sit back take what they give me and then move on like my whole working career has been since I got out of the Army.  skull   I know that I should be happy but with my head hurting and my work hurting me I am sad and lost.  I am really thinking of not answering my phone the rest of the night and just hybernating. sad

Posted 12/2/2009 11:36 AM (GMT 0)
Kimmers,
Dont give up-there has got to be a way for some relief in our lives but you gotta be a fighter-I know, somedays, it seems impossible but the next day is a new day and you have to try different things.
Have you ever tried head-on? or co-enz Q10 with magnesium sulfate-I heard that helps. I have to work but I'll get in touch later-keep fighting for you!!!
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