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stopthepain88 04-22-2012 09:59 PM

24/7 headache all the time
Hello. This is my first post. My name is Jon. I am 23 years young. I have had a headache since August 1st, approx, 9 months. Not headaches, just one long miserable headache. I'm sure there are others out there so I figure why not give this message board a try.

As far as tests are concerned, I've had various blood work done, Mri of neck, mri of brain, CT Angiogram, EEG, and 6 xrays of neck. I have seen 2 neurologists, one of whom got me into the Jefferson Hospital Headache Center in Philadelphia. I have seen them twice thus far. I go back at the end of June.

There have been other specialists along the way. I tried the chiropractor route which led to an upper cervical specialist. It turned out I had a misaligned neck. My c1/c2 were off alot. This was corrected but no change in the headache in the slightest. There was hope that c1/c2 issues cause migraine like headaches but in my case i had 2 separate unrelated medical problems.

If anyone list any specific recommendations, i can tell you if i tried it. The last ones i currently tried were the sumatriptan (100mg) pills / and injector. I tried indomethacin for 3 weeks and even though i took tums, pepcid, and omeprazole to adverse the effects, that medicine tore my stomach apart so i stopped. I have currently been on Topamax since January, taking atleast 100 mg everyday for 2 months. The docs at Jefferson are going to see what happens when i try 200 mg for 2 weeks before i wean it. After that I will try something called Elavil. I have been trying medicine without success for awhile. I know there are others who have done it longer so can imagine how frustrating it can be when it is all experimental, and all you get is side effects. I have been on 14 or 15 meds so far.

The headache didnt just come out of nowhere either. I was weight lifting one day and I felt something off and Ive had the same headache ever since.

I thank you for taking the time and reading this. Any help will be appreciated.

stopthepain88 04-23-2012 04:01 PM

Re: 24/7 headache all the time
When the headache started on August 1st, it was very inconsistent. It was everywhere (side of head, back of head, top of head) It did this until the 3rd week of September. Since this time, my temples are always throbbing, the forehead is always pounding, and when it gets worse, the top of my head is pounding. I hate referring to the pain scale but since the end of September, it has stayed between a 4-6. Some of you may thing this is mild. It is not. A 6 on this scale will keep me bedridden and I hate to admit it but yes there may be some tears. Its just it is a pain scale and i know it was way worse back in August so as bad as what im dealing with is now, it doesnt not measure in levels of pain what August brought. If my headache was a 10 in August then this at the worst is a 6.

I think it may also help to understand who i am. I am 6'1" and started out 175lbs when this happened. I lifted 5-6 a week. I ran 3-4 times a week. I played sports. I ate healthy. As i write this i currently weigh 150lbs. The weight loss can partly be attributed to medicine side effects.

It is more than a headache. I have not lifted or exercised this entire time because the smallest activity sets my heart racing. Even carrying groceries in or carrying wet laundry into the dryer can make the headache worse. Any small activity you can think of it affects. Having painted a picture of my life before this, you imagine how my life is different, which adds to the frustration. It hurts to do the stuff that you like so i just cant do it anymore.

I am not asking for sympathy or anything. Just if anyone has any direction or if your in a similar situation i would be grateful to hear from you.. Thank you.

Speedbunny70 04-23-2012 07:30 PM

Re: 24/7 headache all the time
I'm sorry to hear about all the pain that you're going through. I know how
You feel, I've been suffering since I was about 14, I'm 32 now.
The last time u lifted weights did u feel something crack?
Have u tried cortisone injections in your neck? Acupuncture?
I know some people that have gone all the way up to 1200mg of topamax.

stopthepain88 04-23-2012 10:35 PM

Re: 24/7 headache all the time
I was doing some biceps curls. As far as something cracking or anything, no i just remember i was in the middle of a set and i was probly over exalting myself by not breathing right. I didnt just wake up with a headache so unless the weighlighting experience was a trigger, it would seem that it would be a structual problem but all scans so far have been negative.

I have not tried any cortisone injections of any kind. We are currently looking into acupuncture. I mentioned i had the misaligned neck. I am just getting comfortable turning my neck left and right with less pain so i wanted to wait for it to be less painful. Same with my shoulder blades.

I havent felt different at all taking the topamax, i know it doesnt work for everyone but it is my understanding that doing as much as ive been on, 100 mg for atleast 2 months and now upping that for a brief period, it should change it in the slightest. And thats kind of what brought me here. It is all experimental but the fact is I have taken medicine that works for alot of people and none of it changes my condition in the slightest.

This goes back to it being structural. Maybe none of the medicine has worked because there is still something structurally wrong that hasnt been picked up. I know my docs were willing to give me a spinal tap, thats the one test i havent got yet, and its only to rule out something called idiopathic intracranial hypertension, which is a spinal leak in your vertebrae. I have talked to someone with this and it just doesnt seem that my symptoms match this. Patients of this, when laying down comment how the headache changes quite noticeably and when they sit up the fluid leaks worsening the headache. Maybe if someone here has had this they can comment on this further.

Speedbunny70 04-24-2012 06:07 AM

Re: 24/7 headache all the time
I've had the spinal tap done also. It's very important that you don't get up right after the
procedure is finished. You have to lay there for a while. I got up right after I had mine done and I was so violently sick for 2 weeks with a migraine, I couldn't stand up without my my head feeling like it was going to explode. I crawled to the washroom. That's how bad it was.
You can also try some massage therapy and/or Physio.

Speedbunny70 04-24-2012 06:10 AM

Re: 24/7 headache all the time
I've had the spinal tap done also. It's very important that you don't get up right after the
procedure is finished. You have to lay there for a while. I got up right after I had mine done and I was so violently sick for 2 weeks with a migraine, I couldn't stand up without my my head feeling like it was going to explode. I crawled to the washroom. That's how bad it was.
You can also try some massage therapy and/or Physio.

stopthepain88 04-24-2012 04:00 PM

Re: 24/7 headache all the time
I will continue to keep this an open thread in case people are curious and update it accordingly. I will respond to anyone's suggestion.

In the meantime i will be under my physicians care at Jefferson's Headache Center. I dont have alot of faith in the meds because literally everything i try has terrible side effects with no effect on severity or frequency of headache. The last was the injector and no more than 20 seconds after i took that my face/neck felt like it was on fire. But they are a headache center with a track record of patients with my background so theyre my best option. This will be my medicine option and i will continue taking whatever they recommend.

Under the possibility that medicine isnt going to cure me, i am going to continue pursue every non-medicine option that i think is beneficial. I will pursue acupuncture for sure. I have nothing to lose there. There is something i read in a message board somewhere regarding bone spurs in the nose causing migraine like headaches. Although my MRI is clear, im still going to check this out. This is an ENT visit and possible CT scan of the face. Any other suggestions are greatly appreciated. Like im not familiar how a cortisone shot will help me but ill look into it. Its suggestions like this why i came here. Just looking for other alternatives to try. Thanks

Speedbunny70 04-24-2012 05:53 PM

Re: 24/7 headache all the time
I wish you the best of luck!

AnnaMontana 04-27-2012 05:29 PM

Re: 24/7 headache all the time
Did you have headaches before the August weight lifting incident or this a new thing? If you had headaches before, then I doubt the weight lifting has anything to do with the headache. If not, then the two may be related.

stopthepain88 04-28-2012 07:42 AM

Re: 24/7 headache all the time
No, I never had headaches before until the incident on August 1st. In fact, I was fortunate enough to have very little experience with headaches. Nothing a little Tylenol couldnt handle. So when I still had a headache on August 2nd, then the 3rd, and at this point it was a 10 on the pain scale, I was freaking out. My mom occasionally gets tension headaches but thats it, so theres not really a family history of HAs.

Now I dont know whether or not it is coincidental that the headache sprung during my workout. Though 9 months later, Ive been treated for alot of various headaches; vascular, tension, cluster, migraines, etc. You get the picture. And the meds havent changed the HA so unless its just something im going to be stuck with, perhaps the scans missed something or I just have to find out what kind of available scans could help show structual damage that may explain my problem? Perhaps someone here can shed some light on this.

On an unrelated note, i did try Relpax (40 mg), no change to headache in any regards.

TeeTee79 04-28-2012 01:15 PM

Re: 24/7 headache all the time
I have chronic headaches as well. I mean the type you just want to go play in traffic, it gets just that bad. I have had the MRI's and scans and everything. They still do not know what is causing the severity of these headaches. I have communicating hydrocephalus and had a peritoneal shunt placed which took care of that issue, but the headaches are still persistent. Unlike yourself I do have hypertension, which I have a medication regimen to battle with that. However, the headaches are daily and consistent. I too, am trying to find some help with this. I had the DHE shots January, it helped bring my pain level from a 10 to a 5. Yet, living with a pain level of 4 to 5 daily is very, very awful. Yes, I know how the slightest activity can worsen the pain. It's pure heck living with!! It's so hard to concentrate and very easy to get agitated when you're in so much pain. I am looking into things that will bring relief. I haven't found anything yet. This is a journey I don't think I'll ever be free of!!!

stopthepain88 05-28-2012 09:04 AM

Re: 24/7 headache all the time
Quick update. I tried acupuncture a few times. No change to headache. It did help with the muscular problems around my shoulder blades and neck after one of the sessions but after 2 days of relief, it went back to its old self. The neck/shoulder blade/ upper back problems I have had all the time since that first adjustment to get my c1/c2 back in alignment. At this stage, Im not sure if im going to continue with acupuncture.

As far headaches are concerned, I went up to 200 mg of topamax for 3 weeks (after being on 100 mg for 3 months). Im sure this drug may work for other headache sufferers out there but the most i got out of it was weight loss. My doctor at Jefferson started me on amitriptyline which ive been on for maybe 10 days already. This will be the gameplan for next 2 months atleast i presume. Fingers crossed


stopthepain88 06-22-2012 04:02 PM

Re: 24/7 headache all the time
Still on the amitriptyline. Been a little over a month. Nothing. It helps with me staying asleep but as far as headaches are concerned, nada. I also met with a pain management specialist. He tried nerve blocks. Two injections to my forehead/temple region. Not that it worked anyway, I did have a reaction to the injection and passed out maybe 20 seconds after the second injection.

I mentioned in the beginning that the onset of this permanent headache started while weightlifting. My docs haven't figured out if this is related but I did try a GNC pre-workout substance for the first time during the workout that injured me. It is called C4 Extreme. It is a creatine nitrate. Basically this lowers your blood pressure and increases blood flow to your brain, which is why it is important to exhale while lifting, which I carelessly forgot to do. I only bring it up here because no one has figured out if or how this related. I know deep down this is some way responsible. Currently trying to figure out now the correlation. Nitrate allergy or something but I dont know.

I want to pose a question out there for anyone who suffers/ed from a CSF leak in some way. Since alternate methods have failed, maybe its something meds wouldnt help and something scans wouldnt necessarily pick up. I havent gotten a spinal tap to rule this out because I dont have vision problems. My question is can someone have a CSF leak without having the vision problems associated with it AND the headache not change at all, regardless if positioned horizontally or vertically. CSF leaks are less painful when laying down or gradually get worse throughout the day. I have neither of these experiences. Its the same headache no matter what.

I still feel like somehow, my c's on my vertebrae are somehow related to the headache. I have gotten an MRI of the neck and xrays as well that diagnosed the alignment. Also the CTA. My shoulder blades region and neck still bother me maybe its because while the neck did get properly aligned, theres something else wrong. Two weeks before the headache, I did have a neck trauma. which may be responsible for the misalignment. I was pulling weights off a bar while there was weights on the other side and the bar catapulted to my chin giving me a whiplash effect. I had a couple stitches but zero neck pain in the 2 weeks leading up to the headache and I still lifted in that time. Maybe something in my workout on August 1st along with the C4 triggered something? It is all speculation but I really need this figured out. My life like many others on this website sucks.

Going back to Jefferson next week. Hopefully they have an alternate gameplan as the current one doesnt work. Thanks

Teechur 07-13-2012 05:37 PM

Re: 24/7 headache all the time
Man oh man I feel your pain and I'm so sorry. I just posted. What you talk about sounds to me like you had a small hemorrhage, maybe so small the CT scan missed it. When you add that you took Creatine right before that would lead me further to consider a hemorrhage. What happened with me is I was standing in a movie theater I heard/felt a pop and suddenly had "the worst headache of my life". Fortunately a friend bullied me into going to the hospital about 7 hours later. Long story short--three weeks in hospital, lots of monitoring, and out.

It's been 6.5 months and I've had one long 24/7 headache. Like you, in great shape. Marathon runner, ultra marathoner 50ks, 50 milers, run 50+ miles per week on average, teach bootcamp, running coach, full time teacher, weight training, etc. BMI perfect, good diet, unlike you no supplements because I know that they can have negative repercussions (I'm also a health educator, although right now I teach IT classes to advanced high school students).

I have tried Topamax, nothing except the side effects. My doctors won't, at this point, give me anything for the pain. I have a high pain tolerance so when I say my pain level is "severe" it would put most people UNDER the bed (I've had doctors tell me, more than once, I have a high pain tolerance). I'm now on Amitriptyline and so far all I'm noticing is that I can "push aside" the pain for periods, (think around it where previous unless it was a level 4 or lower day, I would have such a hard time doing anything requiring any creative thinking that I'd have to work 4x longer to complete the tasks, not cool for a teacher).

I wouldn't think at this point even a spinal tap would pick up the bleed. The doctors tell me the blood products in the CSF is what causes the pain (although I was told, and continue to be told, it would/will "just go away").

The neck bothering you might also be consistent with an SAH. Do you recall if when you felt the initial pain your neck also hurt? Mine did, immediately, and I've had ongoing neck issues since then where I never had them before.

I wish I could say "I did this and now my headaches are gone!" All I can say is that I truly feel your pain. I won't give you a list of things to try because I want to b-slap every person who tells me to "take excedrin and drink coffee" (no matter how often I say "It is NOT a migraine my BRAIN BLED!") I think, however, it is very important that you be a cautionary tale to your friends with those supplements. Just because they are sold by a "nutrition" store does not make them safe. (Sorry, Health Teacher coming out here...) Supplements are not monitored for safety and efficacy by the FDA like medications are, so unless there are multiple consumer reports of serious side effects (such as happened with Phen/Fen) people can take them not knowing what it may do their body. I'm not saying this to scold you. You have potentially paid a very unfair price and maybe it had NOTHING to do with it. And you know you're does suck. Chronic pain sucks and I understand what someone else said about wanting to just go and "play in traffic". I guess my main hope is that it can't last forever for me and for you.

Next time you see your doctor ask him/her about the possibility of a Subarachnoid hemorrhage and describe the creatine based supplement, the neck issue, and the feeling of pain and the "sound". Honestly, it sounds JUST like what I felt/"heard" when I had my SAH.


stopthepain88 07-14-2012 09:41 AM

Re: 24/7 headache all the time
I agree 100% with your stance on the supplements. Nowhere in my mind did I think this could happen and I still have friends who take this product, knowing full well that I have become a different person. Everyone reacts to products differently and maybe its related maybe its not, but if I knew about what I'm experiencing as a potential side effect or whatnot, I would never even have approached the idea.

When it happened, what i remember is i reached in the back of my head. I will say that when I crack my neck, the feeling in my neck changes. which is why i avoid doing so. This was why I was extremely hesitant to try the chiropractor route. When I switched over to an upper cervical specialist, a few days after the first adjustment is when I felt the worse of my neck pain and upper back. She didn't even crack it or anything. The xrays gave her a precise degree and I laid down sideways on a table and she applied slight pressure on my neck. I watched my shoulders become even over a couple weeks. The human body amazes me still despite my struggles. Even when I massage the region in the back of the head (suboccipital i think ), the headache gets worse. This is where the headache was the worse in the beginning, but it was everywhere, and more random. We are similar in our high pain tolerance (I've had doctors tell me this as well). Its frustrating with various specialists I've seen who don't take my low scale number as a serious issue. The whole point of the pain scale is to tell how much pain you are in. I was unfortunate enough to have a basis of comparison to compare my pain now with when it started. It doesnt mean that my 4-5 isnt a 10 for someone else.

I will definitely mention your theory. I go back to Jefferson at the end of August and my family doctor in roughly two weeks to discuss other potential stuff to try while I wait to tell Jefferson the latest batch of migraine medicine isnt working. They are a headache center but they seem to be pushing alot of migraine medicine on me that hasnt changed it at all. They did offer to do the spinal tap and botox, but it would only be to try. I understand the need to rule stuff out, which ive been doing, but I dont want to get a spinal tap for the hell of it. There are too many risk factors and if i am only getting one done to try it, I would rather continue trying alternate methods for now. I also had a couple trigger point injections in the suboccipital region. Did nothing.

Jefferson's game plan is for me to stay on the Amitriptyline for another couple weeks, so I will have been on it for 2 months at the appropriated dosage. Meanwhile I am currently building up on something called Verapamil. Then give that a couple months to see changes. I'm also on the 1200 mg of magnesium. I dont anticipate that helping but I have to keep ruling out ineffective medicines.

When I see my family doctor, I am going to discuss more stuff to try on my own, as I cannot sit and only do medicine. I want to get trigger point injections in all the spots I can on the neck/upper back region.

I thought about approaching my strategy slightly in an effort to try more stuff. I thought, what if it isn't categorized as a headache per se, even though i am dealing with pain all the time with in my head. When the pain migrated to the forehead back in sept/oct, I compared it to a really tight rubberband or a really tight hat. I dont recall if I mentioned it in previous threads but my forehead situation restricts me from moving my eyebrows up. It is an odd sensation and only ppl who feel what I have going on there can truly understand what I just described. Anyway, my search of my "forehead pressure" led me onto many threads of the 2 things i just described, as well as this "pressure" extending to the bridge of my nose. I never saw an ENT but the scans showed sinus's were clear. I never had headaches really, sinus or otherwise prior to this incident. Back to the point though, unfortunately these threads didn't have an answer. So I am going to investigate what can be done with this forehead pressure if thats what it is. I may get nowhere with my efforts but it is a different approach than my current one that isnt working. I want to get a frontal ct scan, as my headache back in August when i had the mri didnt have this forehead pressure. Maybe it doesnt matter but I will only know if i get one. Also will want to get more blood work done. I've only had Lyme and a couple others that i forget.

I would like to believe that since something is "broken" with us, it can be fixed for people like us and many more around the world who hope to one day be pain free. This is a struggle that no one deserves. I will continue being persistent with my efforts, and I wish that you do too.


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