Constant Ongoing Headaches

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New Member

Date Joined Nov 2011
Total Posts : 4
   Posted 11/18/2011 8:33 PM (GMT -6)   
Hello All,
First time posting in any sort of forum. For the past 3 years I have been suffering from constant headaches with no relief. I will provide a run down on the events:
I was sleeping one night (with nothing out of the ordinary occuring earlier that day or the previous days before) when I awoken by a crushing headache on the right side of my head. Not knowing what to do at the time I took and Advil and went back to sleep thinking I would feel better in the morning. After a day or two of this headache not subsiding I went to the doctor and recieved a CT Scan. The Scan showed nothing abnormal with no evidence of an anurysm or menigitis (anything extremely serious). After about 3 months with the ongoing headache on the right side I started to feel better and the headaches went away completely for 2-3 months. When working out at the gym one day I bent down to pick a weight up and bam, I could feel the headaches coming right back.
Since that day at the gym the headache has been present on the right side from the time I wake up to the time I go to sleep. No relief whatsoever during the day. I have had many tests such as CT Scan, MRI on head and neck, and a Spinal Tap. None of these tests uncovered anything abnormal but still no relief. I have seen a neurologist and he has tried some IV treatments such as Decadron, DHE with Maxeran, and he also tried Botox injections. None of which did anything to help. If anything the DHE and Maxeran gave me extreme leg cramps after treatment completed. To this day which is about 4 months after the IV I still sometimes get minor leg cramps.
As I said before the headaches are ongoing on a daily basis from morning to night. I don't feel like doing much in terms of leaving the house just due to the pain. I am 26 so when I should be in my prime, I feel as if I am 76 in terms of my activity level. I have also had many different blood tests which has not flagged anything abnormal. I am at a complete loss on where to go from here. The headaches are much worse somedays than others but always present. They are always on the right side of my head.
If anyone can share with me simular stories or suggestions it would be very helpful.

Regular Member

Date Joined Dec 2006
Total Posts : 53
   Posted 11/21/2011 1:39 AM (GMT -6)   
Hi Apex,
My name is Michelle and I am in a similar situation as you. When I was 23 years old, I literally woke up with a headache that has never gone away. (I even remember the date that it happened). Now, it has been a little over 5 years and I haven’t had a pain free day yet. My pain jumps all around and is not localized like yours. I also suffer from TMJ and neck issues.

Like you, I have had every test you can think of in the US. I’ve gone through all sorts of treatments ranging from DHE to Ketamine. I have seen doctors all over the US and been to several clinics. I’m basically at a dead end in the major medical headache institutes though I do have an appointment at Georgetown in January. I either need to start searching different universities or over-seas like Germany or Japan where they are doing some interesting research.
I am an outlier. I hyper-metabolize medications and if something works, it works only for about 3-4 months or I experience such serve side effects that I can’t tolerate it or the most likely situation is that it just does not work. Of course, there are exceptions to every rule, but my list is very short.
I am currently 28. I am always tired and exhausted. I am on SSDI because I just haven’t be able to work. Fortunately, I am not without a support system. They are all wonderful, especially my fiancé. She also deals with chronic pain, so we both can relate to each other on a level that your normal friends don’t face. Also, that is why I love this forum. It is an excellent place to converse, gather info, and share stories. I think anyone who is struggling with something so terrible needs a place (even in the digital world) to vent, whine, cry and also share good news and happiness.

My suggestion to you is never give up. Always search, explore and push the boundaries. Sometimes it a crazy idea that may just work or it could be just the right cocktail of medication (this seems to work for most people). I really liked this book call “All in my Head” and I bought it on Amazon. The Mayo Clinic on Headaches has some good information and it is probably in your local library. If you would like suggestions of places I’ve been, treatments I’ve tried, medications, etc, please feel free to drop me an e-mail.

I really do wish you the best of luck. There is no other way to say this, but it sucks.

Wishing you to be pain free.

Have had a pain-free day since Sept. 2006.

Always looking for a new idea or treatment.

New Member

Date Joined Nov 2011
Total Posts : 4
   Posted 11/26/2011 1:43 AM (GMT -6)   
Hey Michelle,
I sent you an email reply. Is the address on your profile the correct one?

Regular Member

Date Joined Feb 2005
Total Posts : 310
   Posted 11/29/2011 9:35 PM (GMT -6)   
I really understand your frustration! I deal with chronic daily migraines. I have tried so many different medications...maxalt, relplax, zomig, imitrex, toradol, klonipan, zanaflex, migranal nasal spray, botox injections, DHE protocol at UVA Hospital. My list goes on and on. So funny today I went to pick up a RX that my neurologist called in and it was Frova another triptan that I know I can't take! triptans make my chest tight and my throat feels like it's closing in, so why he called that in I'll never know! I have insurance but it wouldn't cover the bill to go to a headache clinic. I have had brain surgery due to having scar tissue on the right side of my brain. My migraines are always on the right side. Right now I am taking lamictal for seizure control and toradol along with phenegran for the migraines. Also have to take a muscle relaxer for neck pain. None of these meds are helping! It's frustrating but I'll never give up on Hope!

I don't see my neurologist again until Dec 14th. I kinda wish he'd do some kind of test to check my memory issues...I'm sure they are coming from the brain surgery and the chronic migraines aren't helping me any! I've also tried botox injections and nerve blocks with no success. All these treatments can bankrupt you! Thank goodness for insurance, but it still leaves little bills coming in that have to be paid. I wanted to go to a doctor in Houston Tx that does nerve decompression surgery but my insurance thinks they know best and they turned it down, however they don't blink to put me on more drugs they just don't want to cure the problem it seems. grrr!!!

My thoughts and prayers go out to you all!

Blessings ~ Mercyme

Veteran Member

Date Joined Oct 2008
Total Posts : 2024
   Posted 1/22/2012 3:12 PM (GMT -6)   
Lady, Apex, Mercyme, how are you all doing? Any break through yet?

i am going on twelve years of continuous bilateral temporal headaches with no relief in site.
It is a tough journey.


New Member

Date Joined Nov 2011
Total Posts : 4
   Posted 10/31/2012 7:49 PM (GMT -6)   
Hello all,
I thought I would write back in since it has been a while. I really don't have any significant update or signs of improvment. I have been trying a combination of acupuncture and physiotherapy, it was going well for a while and the symptoms were lessoning a little bit but they have recently come back with a force.
I have since come down with a sinus infection and that combined with my daily headaches is making life miserable.
Does anyone in a simular situation have any positive updates? Michelle how did it go at Georgetown?
Any insight is always great.

Veteran Member

Date Joined Jun 2010
Total Posts : 2268
   Posted 11/2/2012 11:44 AM (GMT -6)   
I would like to know what steps you have taken to help yourself. Go through the threads and check my posts and see if they are of any help.

Admin or Mod here doesn't seem to be interested in making a sticky with information so that everyone comes here get a chance to do some homework and I have no time to keep typing response for everyone, sorry, so you got to check other threads with my posts. I have posted a lot of useful info. Hope you find some help there.

If you don't find any, post back and I will just make a sticky to post here.
Diagnosed March 2007 with left sided UC at the age of 30.
Currently on,
Colazal 9 daily, Imuran, 200mg daily, Vit. B12, 1mg, Multivitamin, 1 tablet daily, Fish oil 2400mg daily, Vit D 2000 IU daily.

Verapamil 320mg for migraine, Migraine episode now at least 4X a month,
Nabumetone 750mg as an abortive, so far so good with GI side effects.

New Member

Date Joined Dec 2012
Total Posts : 1
   Posted 1/15/2013 9:43 AM (GMT -6)   
After five years of a constant headache and the frustrations of running from one doctor to the next, only to be prescribed medications that did not work or only worked short term, I have had four weeks without a "significant" headache. Here is my story.
about five years ago, when my children were 1, 3, and 5, I woke up one morning with a headache. Over the next couple of weeks the headache intensified and was constant. The majority of my pain was in my temple region and my eyes were extremely sensitive to light. I tried OTC medications which had no effect. Scared, I went to my GP, who ordered blood work and a CT scan. My lab results and CT scan came back with nothing that would be the source of my headache. (I did have a very high ANA count.) She prescribed a handful of medications which did not help. Over the next five years, I doctor-hopped trying to find the source of my pain. Unfortunately, it is very hard to find a physician who will work to find the cause, rather than mask it with medication. I did find some relief with prescription strength Aleve and Toridol, but it only took the edge off. Because of the possible side effects, I would alternate the medications and only take it every three days or so. Those were the days I would pull myself together mentally as well as catch up on any physical work I couldn't manage the other days.
about four months ago, these medications stopped working. My head pain stayed at about an 8 or a 9. My husband saw my hopelessness and called a friend who is a general surgeon for guidance. He knew of a neurologist who specialized in headaches, Dr. Blake in Houston. I saw Dr. Blake and immediately began a series of nerve block and steroid injections in the greater and less occipital regions (the back of the head.)
These injections lessened my pain and brought me new hope. However, the results were not lasting. Because they were effective I was told I was a good candidate for nerve decompression surgery. I consulted with a local surgeon but ultimately decided on a surgeon in Dallas, Dr. Bardia Amirlak. He reviewed my detailed headache journal and was convinced I would receive the most benefit from surgery in the greater occipital region as well as two regions in the front that he refers to as Migraine I and II.
Immediately following the procedure, I had head pain but it was very surface, unlike the deep, stabbing pain of a headache. On day two, when I woke up, I knew something was different. My sensitivity to light was gone! My pain level was a 2 or 3, but again, was very surface. And this was with no pain medication! I am four weeks post-op and feel great! (The only time I have head pain is when I don't follow the doctor's orders and do too much. i.e. moving furniture, playing baseball with my children, etc. It is very short-lived and subsides with rest and ice.)
I know this surgery is not the answer for everyone with a persistent headache or frequent migraines, but I want to share my story so that more people can know of this procedure, which is not well-known, even among physicians, although medical studies have proven it to be very effective.
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