Quick recap before I begin. I am still on Verapamil, 480 mg (for about 3 weeks now). Been on atleast 240 mg since July. I am heading towards the end of the time needed to give this drug a shot. I have started Cymbalta 30 mg on September 3rd and 60 mg since September 14th. This is to pursue fibromyalgia. Neither of them have touched the headache.
The thing with cymbalta is I have been on it over a month and since the second night, I have had major insomnia EVERY single night. I experimented with different times taken. Its been 6 oclock every morning for the last 2 weeks. I am incapable of sleeping more than 3 hours. I go to bed, wake up a few hours later, go back to sleep, wake up an hour later. Some nights I get back to sleep, others I dont and begin my day at 4:30-5:00. Since i dont work on weekends, I basically just take 4-5 naps throughout the day. Never thought that some days I would be taking my first nap at 7 AM. I have tried melatonin and ambiens, neither of which have helped.
Going with the recent side effects of another med for something I probably dont have, and my willingness to atleast pursue a spinal tap, I decided that i need to know I am not wasting my times with these medications once and for all because the side effects are wearing me down. I had the pre-lumbar puncture blood work done last week and am officially scheduled for it on October 22nd at Jefferson Hospital. I am more concerned that the headache will worsen because I have greater odds of a post-lumbar headache and I wont know how this feels on top of a 14 month headache until after they procedure. If anyone has their own experiences with this, or CSF related problems, feel free to help a nervous person out and post directly here.
I have a tendency to relate every potential diagnosis to my situation. (It could be this...It is definitely this...This makes so much sense)In the case of a CSF related problem, it would have to have started when I got upper-cutted by the weight bar 2 weeks prior to onset of headache. This damaged the protective membrane, possibly weakening it. (It isnt that far-fetched with the misaligned C1-C2). Then the workout supplement i took caused a complete tear, which is small enough that scans didnt detect it. I suppose the two main things they will look to identify would be the Spontaneous Intracranial Hypotension and Idiopathic intracranial hypertension. I look forward to a possible diagnosis after all my efforts, but understand this may just be something that I add to the list of ruled out stuff.
I am glad people posted since my last post. I actually didnt have a whole lot planned if the spinal tap only rules out CSF problems and I need to keep going. There is the medication route still. The medications are really ticking me off though but I understand the trial and error aspect of it and you just wont know until you try it. If it says take it for 3 months, I will suck it up because if you give up after a month, you didnt give it a chance to work nor did you rule anything out. I will be sure to explore the thyroid problem issue if it comes to that. It has been mentioned along my journey but so many terms and possibilities have been thrown out there by a dozen specialists/doctors.
I am still pretty sure my neck relates to the headache and I didnt rule a whole lot out where I can confidently abandon my efforts in a different area. The last pain management specialist didnt think it was cerviogenic headaches so he refused to do nerve blocks or trigger point injections. Botox has been brought up as well. The nerve decompression surgery has been linked to some patients who have felt relief so I can also explore issues concerning that or a pinched nerve or something.
I will be sure to keep this going and my fingers are crossed that this spinal tap will somehow be the stepping stone to getting my old life back. To be continued...
Last edited by stopthepain88; 10-13-2012 at 03:33 PM.
thanks Jazzmine. They have been saying all along that my posture is the problem and that my head is at he wrong angle so could be pressure on the C1 but they did not discover the c2/c3 problem. But is worth checking the C1 as you say. The only thing is would this cause my face to swell. It has been really bad this week and the pain worse so hey must be related. I'm going to get the ENT doc to check for blockages. I feel that if there is a blockage this could be putting pressure on nerves therefore causing the pain. They will probably dismiss it though but I think it is wroth a shot.
Hello all. I got the spinal tap. Results were normal. I did end up with the spinal headache that sidelined me to a bedridden position for a week. I am walking about now though. Still cant make it a full day yet but there is improvement each day I feel like. Anyway, I just about got by regular headache back.
As for other stuff, not too much really going on. I stopped the Magnesium after doing 1200mg for 4 months. I am just about off the verapamil. For now, the only med I am currently taking is Cymbalta. Should be on it to atleast December. Still have problems with the side effects, shaking and trouble sleeping being the two biggest. I will ride it out until my next Jefferson visit at the end of November.
Hi if only it was that easy!!! Think my problem is that my ear infection has gone to the Mastoid bone behind the ear. Going to definitely ask about this at my appointment in December and ask for a CT scan to confirm. x
I just read your post and like many other people who replied, relate to your pain. I'm 31 years old and have had a 24/7 headache for more than 5 years. It only varies in intensity and place, sometimes on the top, some behind the eyes, some in the back. I wake up with the headache, and a "cloudy" mind. Neck and shoulders also hurt, but not as frequently. I've obviously been to several doctors and did MRI, CTs and MANY other exams. Took a lot of drugs (Topamax, Pondera, Pamelor, Effexor, Cymbalta, Lyrica, it goes on and on and on). Acupunture with electric stimulation helps the pain for a couple hours but that's it. As does Physiotherapy.
Since it's been a while since your last post, I wonder how you are feeling and if you've made any progress.
I also saw Jon's post since recently joining the site and was curious as to how he has progressed as well. I relate to the original post so much and was shocked when you mentioned carrying in the groceries or any simple task makes the headache immediately go up. I've had a headache for the last ten years every single day. I've never met anybody or heard of anybody with a similar experience as mine. It's comforting to know I'm Not the only one but it's horrible to know other people have to deal with this.
I know this thread went dead a while ago but I'm keen to hear if there was any progress?
I found this thread after suffering a severe migrain from using C4 Extreme. After the first headache I stopped using it but always felt this mild headache sitting there ready to resurface the minute I exerted any sort of effort. When I returned to the gym a week after last taking C4 the severe migrane returned within minutes of my first exercise.
This might have been mentioned, but I have a similar situation. They tried botox injections, which didn't work for me, but may work for others. The other thing they tried was Propanolol (sp?) as a daily deterrent. It helps about 10%, but I am also looking. I just had an x-ray that shows some cervical disc degeneration.
I know how horrible it is to suffer from constant headaches and pain.
I always feel like i have some sort of tension headache waiting to develop as well. It's like i feel it somewhat in my eyes, jaw now too, etc. i've had headaches for years.. Have been on elavil 50 mg, mri's, no neck xray yet. Debating on going back to a neuro. Unsure if i should get a spinal tap or an mri with contrast to check blood flow. But one thing to consider, get tested for lyme disease. Order an igenex kit which is $200. I tested positive for it
Since somebody responded to this post I saw that I had posted on this thread before I had a diagnosis. I went to Mayo Clinic and they told me that I had a spinal fluid leak that everybody else missed. It wasn't found in a spinal tap but on a MRI of my spine.i had all those tests locally but it went still undetected for five years. My brain MRI was normal which is not typical of a CSF leak. My surgeon told me only ten percent of people have a normal brain MRI with a spinal fluid leak. I needed surgery to repair the leak after about five painful tests to determine where it was in my spine. I also had three blood patches which all failed. The surgery helped but I am starting to get the headaches again. I have another appointment with Mayo next week to find out if I need another surgery. Mayo clinic was able to diagnose this rare condition and I wish I had skipped my local physician and went right there.
Any updates on who started this thread?
Last edited by Nicolette858; 04-09-2015 at 10:06 PM.
It is helpful to know the progress you are making. No one except another sufferer knows how bad it can be.
Since my last post, I have had another MRI and will now be referred to a surgeon for arthritis in my neck.
I have also been diagnosed with fibromyalgia, and take LDN, low dose naltrexon, which sometimes helps my headaches.
I was trying to think out of the box and started taking my blood pressure with a wrist monitor when my headaches were the worst. I found I have pretty high blood pressure in the morning as soon as I wake. It never showed up as high in the doctor's office, so it was missed. I now take a water pill and medication, which helps a bit.
Last edited by Administrator; 04-10-2015 at 08:56 AM.