Chronic Daily Headaches

[jenprus]

I have had chronic daily headaches for the last year now.  Since right after the birth of my last child.  I have tried all kinds of different meds from daily meds to preventatives.  I do not think that they are migraines since they do not come with anyother symptoms, but I am not sure  They are alway one sided though.  My neurologist has not really told me what causes them or what they are just switches my meds or ups the doses.  I do get relief from the triptans (maxalt and frova), but that only last that day and the next day I get the headache back.  Since I can not take the triptans everyday I am stuck with this headache all the time.  It has taken over my life.  I am married and have 3 children and it is effecting my family life also since I am miserable a lot of the time.  I have go to the point where I feel hopeless.   I have starting taking topamx a month and a 1/2 ago, but am having a hard time with the side effects such as feeling out of it and confused.  So we are not able to up the dose like we planned.  So my question is does any one have or had anything similar to this and is all I have to look forward to is a life of medication?  Thanks

[VictoriaFleming]

I have had chronic daily headaches and migraines for years (since I was 9). I have tried so many drugs, doctors, neurologists, even pain specialists. In fact, my neurologist just referred me for experimental treatment.

Migraines and headaches are very unique to each person. I take topamax and I've tried Maxalt. It has not destroyed me like it has someone else....and it's and extremely high dose of topamax. I'm so sorry that it has someone else, though. It took me a bit to adjust to the topamax, but I did adjust after a couple of months. Amitryptaline, beta blockers, and some blood pressure medications can also be used as preventatives.

At the pain center that I recently went to, the specialist have me lidocaine blocks (needles in my head) to give the pain centre in my brain a chance to rest and restore itself. I've also had Botox shots and will be getting cortisone/lidocaine shots together next week.

I was also told to take magnesium, coenzyme Q10, melatonin, and 5-HTP supplements.

I have tried countless medications and treatments (physio, massage, acupuncture, laser), so you are all welcome to e-mail me if you have questions or just need some support. Chronic pain is a difficult thing to go through.

Good luck, everyone!
Victoria
***@****

[mollymom59]

Thanks for the info on the neurologist, neurosurgeon, and migraine specialist.  We have a group of neurologists near here.  Each has a different specialty.  When my son was 14 only the sleep specialist doc would try to work with him, even though the migraine specialist would work with 15 y/olds and Alex's birthday was only 2 months away.  This 1st doc was very good with Alex and did as much as he could even worked with the other guy but we eventually had to switch over.  This 2nd guy had a PA that intimidated my son.  They saw Alex in May with 6 weeks left of school they wanted him to be removed from school and home schooled.  He had already missed so much and he plays several instruments in the band and ensembes.  Alex couldn't think fast enough to answer her questions so he would look to me for help.  She accused me of not letting my son talk - when Alex heard that. that was it.  By then he was 16 1/2 and would have nothin more to do with doctors. I just worry since his college next fall is a 6 hour flight away.  Over the years (he has had other major probs before the migrines) all these doctors have shown him how much they don't know. He is very disgusted with them in general and I'm afraid that he won't go to a doctor when he really needs to.I know there is no way he's consent to a chiari operation with all the strange doctors he's met - I don't think he'd trust any of them.

Since Alex started having migraines at about age 8, we have been to many neurologists.  My sister warned me, and we soon discovered she was right, that the neurologists, in our area at least, are very quirky.  We had one who kept us waiting in the exam room (all the rooms had patients waiting) for 4 hours!  Her reason was the new assistant started that day.  The doc didn't finish any of her sentences, she just sorta trailed off....and we had to play 20 questions to figure out what she was trying to say.  When she left the asst alone with us for a few minutes we asked her about it. she said it was her first day but the doctor was like that with all the patients and she couldn't understand the woman either.  

Another one we saw, when Alex was about 12 kept asking, every other sentence, how I knew Alex was still sick at different time during the day.     Alex and I kept looking at each other as I tried hard to figure out what the doc was asking - I kept trying different ways of answering.  The doc asked one more time and as Alex and I shook our heads at each other - neither of us knowing what this guy was looking for, and for the first time I finally lost it right to a doctors face - I raised my voice and told him that Alex did not keep complaining  because if he did I would have just yelled at him that there was nothing I could do about it anyway!  The doctor didnt' ask again and Alex had a good laugh when we got out to the car.  Needless to say we went on to try to find another doctor.  We were about to try doctors at a hospital 2 hours away who were supposed to be good when someone told us about the group here.
I just did a sleep study with Alex's old doctor and he told me about a new migraine specialist who joined the group - his nurses told me the new doc was similar to the sleep specialist so he should be pretty good with Alex.  Alex agreed to give it one more shot even if its just to get a note for his college about his migraine history.

Maybe I should take Alex's MRI to a neurosurgeon.  He might have more meaningful feedback than the spine surgeon

I will look up Occipital headache..

Thanks again Carol.  Take care.

[Carol543]

Sorry, I meant to tell you to look up Occipital  HEADACHE specifically, instead of Occipital nerve. Carol

[Carol543]

Hi, I'm new to the forums also,  but feel so compelled to help anyone that I can with what I have learned. One thing that I have to stress is what I was told my the Physician Assistant at my Neurologist's office (not my Neurosurgeon's ofc., but my Neurologist's ofc.) The P.A.is a migraine specialist, and she said the surgeon or Neurosurgeon IS NOT a migraine specialist, and believe it or not, is not completely trained in the understanding of migraines, and it is SO IMPORTANT to go to a migraine specialist, I guess usually at the Neurologist, or maybe they have separate places with migraine specialists, but that is who you need to be dealing with. Not even your family doctor if you aren't seeing results. This is what migraine specialist do-and she was right on with me. While I'm awaiting surgery, she put me on Zanaflex, and as I  said before, even with the mess in my neck, I have gone from daily headaches to maybe 1-2 a week, if that many. It's all because the Zanaflex relaxed all those tight muscles that have been like a vice, clapping down on everything. I am not minimizing what Neurosurgeons and other doctors know, but the migraine specialist told me people who have migraines and aren't getting relief by those other means NEED to see a migraine specialist. No one should have to live with these awful headaches. Good Luck with to you and your son. Hope I helped in some way. Carol.

[mollymom59]

Thank you for the info about the occipital nerve.  I will be researching that next, along with PFO and migraine, and chiari.  My son has c3/c4 congenital fusion. The spine surgeon we consulted didn't seem concerned at all about his xrays and MRIs - just said canal was a little narrow but nothing to worry about.  flexeril if needed.  His migraines began almost 10 years ago - he will be 18 in 2 months.  His neck is painful most of the time, but at least his headaches have diminished to 2 or 3 days a month. He hates pills - the neurologists tried so many - two years ago he ended up in the emergency room with medication induced fevers (he was on topomax and 2 other meds then).  He had to be stepped back down from the meds so he still had to endure several more days.  The neurologists have done MRIs w and w/o contrast but say the fusion has no connection to his headaches.  The college he will be going to in the fall is unrelenting about missed classes.  I'm grateful for any leads.  Thanks.

[mollymom59]

I'm new at this forum stuff - used to daily headaches - off and on for 35 years - you've gotten lots of great advice.  New Doctor, Mag/B2/Feverfew vitamin, MRI, watch mixing of maxalt and cymbalta, topomax not good for my teen son, Maxalt great for my auras.  

Daily TMJ headaches in high school, First aura away at school at 18 - school med center had no idea what it was?!

Later when my kids were little and me back to school, I began daily migraines.  Light & sound sensitivity, etc.   After months, I saw I sometimes had a good day.  After detective work I found most foods I ate had canola oil in them.  With the little kids and my school we were eating a lot of packaged, canned, frozen, storebought or restaurant food.  Read the labels of some of your favorite dressings, boxed or "ready to make just add such and such" foods and see if an ingredient repeats in each.   Two years later daily headaches again.  Due to my kids lactose intolerance we had switched to a lot of soy products.  This time it didn't take long to figure out - now I cannot have soy - including anyhing made in vegetable oil which is another word for soy oil. I switch oils - corn, olive, peanut, etc. to try to avoid this happening again.  Doctors couldn't figure it out - either time. Now I have to make all my food fresh and read every label....

For the last 3 months I again have had daily headaches, I kept records, lots of different kinds of headaches, no ryhme or reason.  Luckily my doctor, (who is not much help) has a great PA. 4 weeks after seeing the doc I made another appt to see the PA.  He looked in my nose with a scope and said I had a sinus infection.  I am now on antibiotics and the headaches diminished. Turns out he used to work with ENT surgeon and even though I had no other sinus symptom he did not dismiss me.  Past sinus infections with previous doctors were dismissed as colds over and over - I got defensive and depressed. The infections were so frequent and so painful when untreated and almost always with headaches that increased when I bent forward.. (Turns out unknown/untreated acid reflux can cause sinus infections.)  Gotta remind myself - when dismissed or minimized - switch doctors!

Sorry Jen (and everyone else), I guess I needed to vent. Hope this info helps somebody else not have to go through so much needless lost time. (Flexeril may help if Zanaflex doesn't).  Good luck, hope you get relief soon.

[Carol543]

Hi Jen
I'm glad to hear you are going for an MRI of your neck. It may not show anything wrong, but it is certainly worth checking into. If the doctor rules out a problem after that, your problem could be something as simple as tight muscles or stiffnessin your neck and muscles from carrying the baby around or just from stress. As I said in my earlier posting, the muscle relaxant Zanaflex has been a life saver for me so far. And, that is with the mess still in my neck..before surgery. I went from terrible daily migraines, to maybe two a week. It is too good to be true. I am having no side affects, because the neurologist had me take a quarter of a pill per day for 5 days in a row, and I kept increasing it every 5 days. I am now taking 1 pill and a quarter. They plan on stopping me at 2 pills per day, which is 8 mg. My neck and shoulders start to get stiff by late afternoon (I take the medication before bed), but maybe once I up it to 2 pills, it will be gone completely. Also, the surgery should eliminate all that tension and stiffness too, I hope. I do have arthritis in my back and neck anyway which has been managable for the most part, and I've always had stiffness, so I would imagine the doctor will keep me on Zanflex after surgery. The plan is to take me off of the Topamax, which has done NOTHING FOR ME in the past. I think I have to be weened off of it, though.
Also, I learned that there is something called an Occipital nerve that runs in the upper area of the cervical (neck) spine in the C1,C2 area, I believe, andif there is pinching or something wrong in that area it is often the cause of migraines. Please look up Occipital Joint, or Occipital Nerve and Migraines...and ask your doctor about that, also. I think that would show up on an MRI if there was a problem.
I can't emphasize enough about asking about the muscle relaxant, Zanaflex, if all else fails. I had no faith in it, I thought, oh great-another pill....and what a pleasant surprise it has been with no side affects! Good Luck, Jen. Keep us posted.

[teamlennon]

I had a huge decrease in migraines- maybe up to 50%, when I stopped taking the BCP- it's not a great BC option for women with migraines, there are other non-hormonal methods (copper IUD, etc.) It's an easy test to see if it is all or part of the cause.

I started Topamax 7 weeks ago. I am currently at 50mg qday- never got to a higher dose. 75mg was giving me heart dsyrhythmias (very abnormal reaction) and excessive fatigue.... although for the 7 days I stayed at 75mg, I had no headaches. At 50 mg, I am still having almost daily headaches, and the side effects don't feel worth it to me. I am taking the vitamin/supplement cocktail also (Vit. B2, Magnesium, COQ10.) I would strongly urge you, with your doctor's advice and guidance, to seek an alternate method of birth control. It's easy to stop, and if it makes no difference to your migraines, it's easy to start again. Make sure you do it with your doctor's guidance. Good luck.

[jenprus]

Thank you for all the advise.  My doctor has actually weened me off the topamax and I started taking the vitamins that were recomended.   So I do not feel crazy anymore, but still have the headaches.  I am scheduled for a MRI this Friday so hopefully we will figure something out.  I had one more question does anyone think that me taking birth control could be the cause of my headaches?  The only time I can remember being headache free was when I was pregnant for my three kids at which time I was not taking any birth control.  Just a thought.  Thanks again for everyones advice

[Carol543]

Sorry, but after that long posting, I actually forgot something. The migraine specialist at my Neurologist's office (she's the Phys. Asst.) said that the definition of a migraine is chronic headaches that do not go away with regular tylenol-where you have to keep taking something stronger, and also you do not have to have any other symptoms like the aura, sensitivity to light, smell, sound, vomitting, etc. I didn't have any of those other symptoms. It's the chronic headache with pain all over my head, really. A lot of times I have pain in my eye sockets, not my eyes themselves, but the eyesockets, throbbing temples, and even pain on the very top of my head as well as all over. That's on top of the aching neck and arm pain.I also have a lot of sinus pressure that's way up at the top of the bridge of my nose, and the Neurosurgeon is sending me to an ENT doctor to check that out before surgery. It could all be related. Anybody out there ever hear of the sinus problem with neck problems?It might be something separate?

[Carol543]

Jen, I was particularly interested in what Dr. Antony had to say in his comment above, and actually encouraged. I have am about to have anterior cervical (neck) spine surgery in the next month on my C4-5, C5-6 levels. I have a very badly herniated disc at the C4-5 level that is torn open and compressing my  spinal  cord. The other level is also buldged out and compressing my spinal  cord.My Neurosurgeon has to remove the discs and bone spurs(caused by arthritis), fuse the bones and put a plate in for stabalization. I already had some arthritis in my neck which was causing some headaches for years that were tolerable, but 16 months ago I accidentally violently stood straight up into a huge 12 inch in diameter  horizontal tree branch that was extending from a tree in my yard, while working in my rock garden. I saw stars, and felt everything kind of jam, and went to my family doctor and he kind of blew the whole thing off. He said I just "sprained" my whole spine. He never took an xray or anything. I started getting migraines within the first week after, and he kept saying they had nothing to do with hitting the tree branch-that it was just a coincidence that I got them at that time. I suggested that I have an MRI done and that I go to a neurologist because of the intensity that my head hit this huge branch and he said it wasn't necessary. I needed his referral, and I figured he knew what he was talking about. I kept asking him for months and months on end, and he just kept me on migraine medication. The headaches went from 1-2 a week to 2-3 a week, etc.  for months, and around Thanksgiving of this past year every day. He originally had me on Atenolol, and Relpax. I couldn't stand the Atenol. I am an extemely fit and active 53 year old female with a lot of osteoarthritis in my lower back( I've been on Lodeine twice a day since age 44 for that), and I've always dealt with it by keeping active and walking to keep my  back muscles strong. But, the Atenolol was making me feel like a zombie. Then he switched me to Topamax 50 mg. per day, which hasn't done a darned thing for months, then upped it to 100 mg. a day-again doesn't do a thing. I have been taking the Relpax at the onset of the migraines like candy, and you aren't really supposed take more than 2-3 a week. Finally, I was at wits end after 15 months of asking to go to a Neurologist, and constantly telling my doctor that I thought the problem was stemming from my neck from hitting the tree branch. (There was a lot of tension in my neck, shoulders, and upper back, and months after the accident-pain going down my arm, which he also  didn't think much of-he gave me a cortisone shot, and said I probably pulled a muscle with all my yard work and activities) I just couldn't trust his judgement anymore-I was an idiot for trusting in him for 15 months. I finally  insisted at the end of Jan. for him to send me to a Neurologist and hesitantly he HAD to agree. The Neurologist sent me for an MRI IMMEDIATELY upon hearing my story and found the horrible mess in my neck, and now I am in for this scary, God awful surgery through the front of my neck. They sent me to the Neurosurgeon right away because of all the compression on my nerves and spinal cord. I will be getting the surgery date any day  now. The migraine specialist at the Neurologist's office put me on the muscle relaxant Zanaflex IMMEDIATELY to relieve some of the tension in my neck muscles, and shoulders and upper back caused by the mess in my neck. OH MY GOD !!!! They only start you off on a quarter of a pill at a time and you  gradually work your way up every  5-6 days to another quarter of a pill until you get to 2 pills, which is 8mg. This is to lessen the side affects. I have had no side affects!!!!!! I take the medicine at night befor bed, and I sleep like a baby, and don't feel groggy the next day. Even a quarter of a pill made a huge difference in the muscle tension, but more importantly, IT LESSENED THE FREQUENCY OF MY HEADACHES LIKE YOU WOULDN'T BELIEVE!! Hopefully, the surgery will take so much more tension and pressure out of my neck-off of the nerves and spinal cord and relieve most of the headaches. I may not be free of all my headaches, because I did have some before my accident, probably due to arthritis in my neck, but NOTHING like this. I guess my whole point is, you should get your neck xrayed or better yet get an MRI done. You may have a problem in there like the doctor said that can be easily fixed with physical therapy of a muscle relaxant. Maybe when you were pushing during labor you  aggravated something in your neck. I have 3 sons, and had 3 brutal labors, and chose not to have any medication whatsoever because I didn't want the babies to be exposed to anything(I'm a glutten for punishment)and I used every muscle from head to toe and all the strength I had. I don't know if it's possible to aggravate something in your neck during labor, or just from carrying all the extra weight around during pregnancy. I say YES !!!!!! Please go to a different Neurologist of a migraine specialist because you need to get your neck looked at for starters. I am hoping to be able to go off all the darned migraine medication (Topamax) and maybe just stay on the wonderful muscle relaxant if needed after surgery. The Relpax has been a life saver at the onset of my migraines,but I'm hoping to be rid of that to, along with my family doctor. I'm sorry for this long posting. Good Luck!

[alagirl]

It's pretty rare, but for those who do have it, it can cause chronic headaches and migraine type headaches.  And its treated with blood thinner and aspirin typically.  I went from daily headaches to no headaches.  It never hurts to check for lupus either with atypical headaches.  If you want to get fancy, you can also ask your doctor to check for any other problems that would tend to cause the blood to coagulate too easily.  

On the topamax, I was up to 400mg per day at one time, plus namenda.  I was SERIOUSLY trying to get rid of the pain.  Obviously, I had titrated up that far over a number of years, but nothing was working in the long term.  After a while, I didn't really notice side effects from the topamax anymore, but they were difficult at first.

[turbo236]

Jen,

I can't say that I'm really having any problems with it.  I do take several other medications, including Effexor and Cymbalta, which my PM doc is kind of hoping the Cymbalta is somewhat helping with the headaches as well.  We never figured out what was causing the headaches to begin with, just treating them with meds.  I have been on Topamax for probably 5 months, taking 50mg per day.  I have been lucky to only have had a handful of headaches since I started the Topamax rather than almost daily like I was before.  My doc stressed to me that I should take it at bedtime to avoid some of the side effects that it may cause.  Not sure what time of day that you take it but that may be worth a shot as well.  Do you take any meds for anxiety of depression? Trazodone for sleep?  I am pretty sure that you aren't supposed to mix triptans with any antidepressants as this may cause serotonin syndrome.  You can google that and find quite a bit of info on it.  It may be worth mentioning the Physical Therapy thing to your doc or even looking around as some PT clinics will offer free first visits so that you can give it a shot on someone else's tab.  Best thing with that is there's no medication involved.  Your dilemma is very interesting to me and I wish I had a better knowledge of this subject so that you could get some relief.  Keep us updated and I will try to do some research tomorrow while I have some time off work and let you know if I find anything else.  Good Luck!

[jenprus]

How long have you been on the topamax and how much.  I am having a hard time with the side effects of it and since we have not been able to up the dose it is not really helping the headaches.  I feel so out of it. Not even myself at time.  I am not sure if this is a side effect that goes away with time.  So on top of the headaches I feel very disoriented.  Not sure If I should just try to stick it out.  I have read a lot of bad on it.

[turbo236]

Jen,

In addition to the meds, have you tried seeing a physical therapist?  I have heard many success stories and my girlfriend is actually a DPT and when I have a headache that breaks through my Topamax, she is able to get rid of it in a few minutes nine times out of ten.  It is definitely worth a try if you've never tried it yet!  Good Luck!

[jenprus]

I did not have anything out of the ordinary that I know of with the pregnancy.  It was a little harder on my body.  I did feel a lot worse than the other two but I just figured that it was because It had been 6 year since my last one.  What is this syndrome?  How long  for you to finally be able to start feeling better.  

[alagirl]

Barring that, my personal belief is that namenda and topamax are the best thing going for both migraines and tension headaches as prophylaxis.  I took them both together and they helped some.  I also usually added in an antidepressant known to suppress headaches (of which there are a few).  And I did also take the magnesium supplements with it as has been suggested - still do in fact, along with some other vitamins.

Now I'm able to just use some coumadin and aspirin with the vitamin add in and I'm good to go - but before, that was my drug cocktail.  

[alagirl]

Anything unusual about your child's birth?  Did you have pre-eclampsia or HEELP syndrome?  I am very biased about chronic daily headaches that increase after childbirth because this happened to me - so when I throw this out there, realize that this is rare, but it is a cause of some chronic daily headaches.  It's rare, but you have nothing to lose by being tested for antibodies to anticardiolipids to make certain you don't have antiphospholipid syndrome.

[tomsant]

Since you developed the headache after you had your baby, one thinks if it started with the laxity of joints associated with pregnancy. Laxity of joints in the cervical spine. It may be a wild guess, but if there is any 'problem' with the cervical spine (vertebral column in the neck) it can cause a headache.

Maybe your neurologist has already ruled it out.

But otherwise, do you feel better when you lie down with your neck and head relaxed on a pillow, or can you move your head and neck into some position when you feel the headache is gone? And hope your neck movements are normal.

Xrays may not mean a thing.

Best,

Dr.Thomas Antony

[DrNoopurMD]

Hi,

I would suggest you to try B complex and magnesium supplements and see if they help with these daily headaches which seem to be a migraine variant.
You can also try alternate therapies like acupressure and acupuncture and biofeedback.
Also try doing some deep breathing exercises everyday.

Thanks

[bella1495]

I have had headaches for years, my suggestion to you is DO NOT take the topamax and maxalt. I have taken both and was on for 1 1/2 years I was a bookkeeper and numbers were my thing. I could not add 2 +2 after those meds were done with me. I am still not normal and I have stopped them in October 2007. When i was admitted back into the hospital. I ended up with prencious anemia so I have to give myself B12 shots for the rest of my life because my body will no longer absorb the nutrient it needs. I had constant bathroom issues where my waste was like bile and so was my vomit.

Unfortunately, I still have headaches not as often the only meds I take now is something to sleep (trazadone) 50 mg and b12 injections. I am trying to do away with trazadone all together. I have just recently ended up in hospital again and I am going to look into seeing a endocrinolgist and see if it is a hormonal thing. I have tried everything else.

My brain has never recovered from topamax and maxalt do yourself and family a favor and get rid of that. I can no longer do the work I did before it really messes you up.