I have been on a wide range of medicines, hoping that with this trial and error method, the headache reacts to something eventually. I have been on sumatriptan 100 mg tablets and also tried the injector version of this, maybe 6mg. Neither helped so i discontinued use
Damn dude. Thats aweful and I can relate. I have headaches every day almost. Mostly tentsion that can trigger migraine, if I don't take my muscle relaxer and a fioricet (tylonol caffeine and a barbiturate) they work good most of the time. I was on all those migraine meds too, and unless.u have a migraine, they don't work. At least for me. I hope u can find answers.
Man you guys are lucky ... You have only had it for a few months to years when iv had a constant headache for 11 years straight... You don't know what it's like to live with that.. It destroys your life and I'm only 14... It makes you depressed .. You imagine living with a headache for 11 years!!!! I'm not lying iv had it since I was three years old :/
I've just finished reading about your 24/7 headache. I am going to share my experiences in the hope that it can shed some light on the csf end of it as well as multiple migraines and a boatload of meds I have tried and results.
In June of 2008 I suffered a "mini-stroke" driving in rush hour traffic on my way into work. I was terrified as suddenly I felt very very bad very quickly. No sooner did I get into work than my co-workers had to call my husband to come get me.
Seemingly almost immediately I started having very very severe migraines and got little relief from the meds my neurologist started mixing and changing in an effort to get me some relief. Going off the top of my head these are meds I have been put on:
Migraine Preventatives - (BTW there are over 100 medications that are prescribed - mainly off-label - as migraine preventatives)
Topamax - worked up to 200 mgs with no meaningful migraine reduction. No longer take it.
Zonegran 200 mgs - similar drug to Topamax so didn't have to taper up or down. No meaningful reduction. No longer take it.
Elavil (Amitryptaline), 200 mgs. No reduction in migraines but was also prescribed it for my fibro pain and horrible insomnia so I still take it.
Propanolol, beta blocker, Have continued taking it as I also have high blood pressure. Now this one seems to be effective as when I have run out I end up having hideous headache and back of neck pain that calms down once I resume taking it.
Verapamil - calcium channel blocker and blood pressure med. Was not effective and therefore no longer take it.
Neurontin (Gabapentin) 1800 mg. Helps with body pain but have never seen a tie in to my chronic migraines.
I have taken Relpax (the best for me to break a migraine but at $33 dollars per pill with no insurance I can't take it anymore which totally sux!)
Current is Sumatriptan 50mg tablets which sometimes helps and sometimes doesn't so it is a bit of a gamble. Also the sumatriptan injectors which are very painful (even with a high pain threshold).
Various pain meds - won't go into all that as I want to get to the csf issue.
In April of 2009 I was diagnosed with Intracranial Hypertension. My symptoms had been steadily escalating. My balance became horrible (is STILL horrible), I lost the ability to see in low lighting which means I had to have either a flashlight or someone guiding me once it was dark or dim lighting at home. I literally couldn't see unless I had the flashlight otherwise I couldn't see my feet, where I was walking I also did a lot of bumping off walls. I was really scared. After a "come to Jesus" meeting with my neuro (who kept brushing me off back then) he finally listened to me and realized that something was going on. I had enough pressure in my brain that it was pressing on my optic nerves which his assistant kept monitoring at my almost weekly appointments back then..
During this time the head pain changed and this is where I want you to reconsider the spinal tap issue. The head pain that I had was severe, didn't not respond to my migraine meds (because it isn't a migraine - it is very high -not low like some mentioned- pressure and NOTHING would touch it.
Before the spinal tap I was put through another set of brain MRI and MRA, CT, and blood work. It was thought that I might have Lyme or MS but he told me that he really thought it was going to be the intracranial hypertension.
That was quickly confirmed as soon as they took the opening reading pressure which was higher than "normal". I was started on a medication called Diamox to lower the pressure. Some people don't get any (or not enough) pressure relief with medication but it did help me quite a bit. For those who don't respond to the meds, they end up having a shunt installed (and some of them have had to have multiple shunts due to malfunctions).
So, the build up of csf fluid and resulting pain is NOT going to respond to migraine meds. If you don't get anywhere with the SAH it is at least worth discussing the possibility of IIH (also referred to as pseudo tumor cerebri).
I'm sorry for the length of my reply but the more I read the more I wanted to say LOL!! I hope you will keep this thread going as I would really like to find out what is causing your pain. I wish you the very best.
And Eli, my heart goes out to you. So very young and so much pain. Hugs to you!
Thank you for taking the time in giving your personal experiences. I just completed the second MRI of the head as a precautionary to see if the pressure changed from a year ago. I am quite familiar with IIH and I'm glad to hear someone share their experiences with this neurological disorder, though I sympathize with your pain.
I understand that if i suffered from this, none of the meds would touch (which I recognized quite a few of the ones you mentioned). This would also be the case in my efforts in the future because it would be like I'm wasting my time. I've been pushing off on a spinal tap actually for my last 4 Jefferson Hospital appointments spread out since January. I kept delaying it to try various things, med routes that were once promising, chiropractor/spinal specialists, acupuncture, nerve blocks, trigger point injections, etc.
Eventually I arrived at the road I currently sit where I have long list of medications I've been on, the various scans I've had done, and the increasing long list of specialists seen. I hoped that something would've touched this headache and unfortunately that is not the case. I actually just a few days ago texted a friend saying that I dont think I can delay the spinal tap for my Jefferson appointment at the end of November. That is still a ways away I know. Bearing nothing shows up on the scan, high pressure or otherwise, I will have tried some more injections, gave verapamil a chance, and hopefully the cymbalta (The side effects for this already are going to challenge me to continue it for the next 3 months). I have not suffered any vision problems but have been alert for sometime that if they present themselves, I need to seek help before going blind (I have had my optometrist see me at least twice. No pseudo tumor was present, though that doesnt rule it out).
Given the previous things do not work, I'm afraid I am out of ideas outside the medicine route where I try various medicines for the rest of my life and hopefully find one that works. I sit here now willing to take a chance that the spinal tap will make it worse for a chance of relief because I need to be certain at some point it is not pressure related.
Some of you are probably wondering why i didnt just get it already and it because of a few reasons. I do not have the vision symptoms nor does it feel better laying down. I am quite familiar with the risks but the one thing that scares me is it will get worse. What i experience now is horrible. My life, like many of you, is very debilitating. But I was unlucky enough to feel the worse of it back in the first two months of this. I hate thinking about now but it surprises me that I was able to survive those dreadful months, not knowing if it would go away. It was more pain then, but easier knowing that a full list of possible scans, meds, and specialists were out there. Having ruled alot of them out, I can only continue with my efforts and hope something eventually works. The spinal tap is near and I dont think i can delay it any longer. Ill keep this thread going and i hope people continue to share their opinions/experiences.
I am glad to hear that a spinal tap is in your near future. I fought having one too and was terrified but eventually, sort of like what I am hearing from you, it became the lesser of two evils but it gave me some answers. I hope that you get answers soon too.
During the time when I was getting diagnosed I did have the headaches which nothing touched I was also having migraines so it became a toss up. Take a migraine med and see if it works.
I don't recall getting relief when I laid down. I do remember hearing a "whooshing" sound and would have "grey outs" in my vision. Scary, scary stuff. I already mentioned the other symptoms in my previous post.
When they took the opening pressure in my spinal tap he then drained some fluid which gave me a bit of relief. I never had any problems during the procedure. The nurse and my mom were freaking out because I hated the laying flat and kept raising my head.
In the event that someone has a tap and has continued pain they can go back in and do a blood patch which basically uses a bit of your blood and injects it where you had the tap and it seals off any csf leakage. I'm sure you know this already but included it for others who may read this and not know about it.
The Diamox helped immensely. The pressure on my optic nerve over time got less and less and it pretty much back to normal. I stopped having the IIH headaches on a regular basis although every now and then I will get one. My migraines continue.
I am glad to hear that you are familiar with IIH. I will definitely keep watching this post and hope you get an answer soon!
It is never comforting to hear about others in a similar situation, especially someone your age. I've "only" had this for 13 months, and I hate looking at the prospective of more years of this. Some days are easier to get by sure, but I cant sit here and say its not difficult looking forward about a life in constant pain.
I think my "official diagnosis" is new daily persistent headache, which i think just means a headache of at least 3 months. It is a very broad category and difficult to cure.
I have had a ct angiogram and mri of the neck as well as some xrays. The c1/c2 were straightened out, though it could always be an underlining issue not detected by scans.
Since I havent written in awhile, I will give a quick update of plans going forward. I did amitripyline for 2 and a half months. I also tried clonazepam for a couple weeks. I still experience muscle related problems from my neck down to mid back so I would really like to get rid of that, as the headache is enough of a problem. I tried a couple other meds like tizanidine for muscle related help but nothing has helped there.
I currently am approaching 3 months of 1200 mg of magnesium. I've been on verapamil for 2 months. With this, i've been at 5 weeks on 240 mg. Jefferson's plan is to double that gradually and try 480 mg daily for a few weeks to see if anything changes. I will also be trying something called cymbalta for a while. This, like the clonazepam, is to pursue fibromyalgia because I havent had much luck with the migraine meds doing anything to change the intensity of the headache. Literally, nothing has touched it. I have alot of the tender/trigger points around my upper back and neck so I wanted to explore if that was related. I had the neck trauma 2 weeks prior to onset of headache, which neck trauma increases possibility of fibromyalgia. Just exploring all options at this point.
I will also be getting another mri of the head since its been a year since the first one. I am not expecting anything to just pop up, its more so to check if the csf pressure is still low. That wont rule out a csf related problem, just keeps it at low risk. I really just dont want to get a spinal tap unless there's evidence of a csf tear or high levels of pressure on the scan.
In two weeks, I will be seeing another pain management specialist to explore more nerve blocks/ trigger point injections.
I have some stuff planned out still. Hope is very low to non-existent but this doesn't mean I will not continue to give it my all to get rid of this headache.
Did you find out if the Dr's felt that you had a slight tear causing a bleed? Have you had your thyroid or other hormones tested? Just asking because my thyroid is out and I have headaches from it. Thought maybe it got snapped or something in the lift or caused the thyroid or pituitary to react to the stress plus the supplement. Just grasping here but I have sympathy my husband and daughter suffer from daily to weekly headaches and no medication seems to help either. I have migraines from stress or smells, but if I can get flat and quiet in the dark I can get over them. Now I know when they are coming and I stop and go right to bed. I will say prayers for you as I am sure this is miserable. Remember NOT all supplements are bad, just try to find a Naturopath or someone who can educate you on side effects and interactions.
Have you ever seen an Iridologist just to see what they might have to say? Sometimes they can give you a way to head when regular med Dr.'s don't know.
Hi my head hurts 24/7, I've stopped saying headaches, and the left side of my face swells. I have had this for 18 months. I believe it all started when I got cellulitis around my left eye in March 2011. Although I was treated with antibiotics straight away the infection spread to my sinus and then to my ear. I had an ear infection for 6 months. Treatment was more antibiotics, I lost count of the number of types of tablets and drops I was taking!! I eventually had a procedure under general to investigate my ear and have a wash out of my sinus. Nothing was found. Since then my head hurt and my neck. After various 'trials' meds and physio to try and discover why, I got worse. It was all blamed on my posture, which I agree is not good but no worse than average. I decided to go to an osteopath. They discovered that my c3 in my neck was the problem and solved that. My neck is now ok but my head still hurts 24/7 and the left side of my face still swells up, especially around my eye. I have been back to my doctor and he suggested nerve blocking tablets which I have refused. I do not want to be a zombie, I want a life and I also want to find out what is causing my head to hurt! Masking with pain killers is not a solution it is only treating the symptoms. But I seam to be admonished by my doctor for thinking that way. He has reluctantly referred me back to the surgeon, who I see in 2 month time, who carried out the previous procedure. I think deep down it has something to do with the procedure carried out. I feel I am not believed and they are not listening.
I am so sorry about the pain. I have been going through simiar pain as you. After going to 6 doctors and 2 MRI's nobody could figure my head and neck pain. Finally one spine surgeon asked me to look up and they did an X-ray. They had me do 4....2 side, looking up and down. So he said I have C1 spine instability and it's serious. He said I need to have surgery to stabalize it which means fusion. I have a strong feeling that's what your problem is. Make sure you go to a very good Spine center or Spine surgeon. Make sure they have you looking up for an x-ray that shows the instability. Don't look up until you see a spine surgeon and ask them to check you for spine instability of c1. All of my headaches and neck pain are coming from this. I am scheduled for surgery soon. I'm 99% sure that's what you have. Good luck to you!
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