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Non stop headache/head pressure, seen almost every specialist under the sun ^^ (please help)

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Migraine Headache
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Posted 3/15/2013 8:24 AM (GMT 0)
Hello, I would really like your help/suggestion. I've seen many doctors and none can find something wrong with me.
I only have a neurologist left to see but with my contrast MRI being clear I really don't know how he could help me

It all started on the 1st of february, the night before I took some codeine as prescribed by my doctor for hernia pain (inguinal which I'm having repaired this summer) and went to sleep. I woke up at 4 am with the worst headache in the world, I took some Ibuprofen which helped somewhat and I went back to sleep, woke up the next day very anxious obviously, my heartrate was racing, I was really scared so i went to see my doctor the same evening, he examined me and it was all clear.
The very very strong headache never came back however ever since then I've been feeling head pressure that stort of travels, sometimes it's on the top of my head, sometimes it's on the left side, sometimes it's on the right.
It seems to get a bit worst when I'm stretching/bending or turning my head and it throbs sometimes but the pain is always mild/moderate and ALWAYS there, during sleep, when awake, when exercising... it's ever present. it's true that sometimes I'm distracted so I don't really think about it/feel it but it's there, the pressure/headache never goes away.

Other symptoms: ear ringing from time to time, weird shooting stars in vision from time to time, light sensitivity especially at night but I think I've had this for longer than my headaches

Doctor's I've seen:

GP: had me do an MRI with contrast, came back clear, gave me anti anxiety meds helped calm me down the first week but not remove the headache.

Opthalmo: had me do a test where I had to see if I could see a small light and I passed it, dilated my pupils... he found that my glasses prescription was good and nothing was wrong except I had dry eyes so he gave me some droplets to take long term but had no explanation for my headache or shooting stars.

ENT: had me on Glycerol since he thought I had high intracranial pressure, followed the treatment for 10 days no change. He also opened my nose artificially since I have a chronic rhinnitus and it didn't help either.

Endocrino: some blood tests showed my calcium level a bit high but did more blood test with the endo and she said my calcium levels corrected for albumine are fine, nothing to signal and no explanation for headache.

I've had thyroid level checked, blood count, 24 hour urine test.... all came back fine and most importantly my MRI with contrast came back clear. Besides it's been 1 and a half months now and my symptoms haven't really changed.

Oh and I found out I was allergic to the codeine; I had to go to the ER once I took it again; i went into accute respiratory depression. They also said it's very unlikely that it is causing my headache. besides I last took it a month ago.

PLEASE HELP. I don't really feel like spending YET more money on a Neuro visit but it looks like that's my final option.
Posted 3/19/2013 5:23 AM (GMT 0)
Hey I know exactly what you're experiencing (except it took me years and several neurologists before I found one that knew what to do. I ended up getting several neck injections (over a period of months) called "stellate ganglion block". It was very expensive (something like $800 per injection). I'm in debt because of it. Anyway this did help lower the intensity of my constant migraine but because of money I had to stop getting them, so I don't know if more injections could have gotten rid of them for good. What I can say is that before I had these injections my life revolved around the pain in my head. Now I can actually function (although I still have an almost constant mild pain). I don't know if you want to jump right into neck injections but I wish I had found out about them years ago so when I saw your post it reminded me of myself so I had to say something. I will add this- my migraines (well one never-ending migraine) sometimes got so bad that I ended up in the ER. I hope this helps or if not, I hope you find something that can. Try finding a chronic pain specialist or clinic that specializes in chronic pain.
Posted 3/19/2013 5:24 AM (GMT 0)
Let me know what happens!
Posted 3/19/2013 10:43 AM (GMT 0)
thanks a lot for your reply, it's something I'm going to keep in mind.
My headache is almost a ''natural'' part of my day now. I don't have time to investigate it further with doctors etc since exams are coming up but I'll see a neuro eventually and will ask about the Stellate ganglion injections.
Posted 3/19/2013 4:29 PM (GMT 0)
I know you've tried everything on the medical side and I am glad they have ruled out no issues with your MRA with contrast because I have aneurysms and one ruptured after a major migraine. Never knew I had them until the rupture. I suggest trying some meditation and yoga. It truly helps relax the everyday stress. You may also want to speak with a food specialist regarding bleached flour, rice, etc. These things can cause issues too. Because I practiced yoga for many years prior to my rupture, I knew exactly what was taking place and when the EMT's arrived I was able to tell them it was a brain aneursym. I was also on a medication called Embrel which I am now finding out leads to teeth problems, and then infections of the jaw and teeth. These may have caused my rupture and my massive headache. Medications are not always the answer, they may mask the true problem.
Posted 3/19/2013 9:15 PM (GMT 0)
@hsaadh -
Reading your posts here is like reading about myself. When the doctor asks, "How many days this month have you had a headache/migraine?" I find it easier to tell them how many days I HAVEN'T had one. Even then it seems like maybe I probably did but it just wasn't as bad as other days. The fact that the headache moves around really seems to confuse doctors (in my experience). I hope you have someone close to you who you can talk to about this because I felt a lot of stress and frustration due to people around me not believing that I could always have a headache. It was only when my head hurt so bad that I was alternating from the fetal position in a dark room to vomiting in the bathroom did they believe that I was in pain. It really does (like you said) become a part of your daily life. On a (very rare) day when I don't have a headache I get this ominous feeling like "where is it? I know its coming. What's so special about today that I don't have a headache?" I know being in school was rough for me with them because not every professor is understanding of the excuse "I have/had a migraine and can't/couldn't do ______". Same with having a job. I had to quit my last job because they threatened to fire me for missing days due to migraines. The ringing in the ears and vision issues are something I can also relate to. I am telling you all this because I want you to know that you're not alone in this experience. I used to think there was some mysterious thing going on in my head causing me pain and I hated the doctors for not knowing what was going on after trying every test they could think of. I have tried a whole slew of medications and currently- as far as migraines are concerned- I take a medication for my anxiety that happens to also help with migraines. At one point I was taking 6 different meds for migraines and I was still having them so clearly medication is not always the solution. I agree with @ctuoni, yoga could be helpful for you. Even just some controlled deep breathing can help. I was told to exercise by several people, but that seems silly when it makes my head hurt worse if its moving around too much. This may sound strange, but ice can help if you apply it to wherever your head is hurting at the moment. I was told once that my headaches could be coming from an issue in my neck at the base of my skull. I tried massage, and let me tell you I felt like a new woman after that massage but the headache obviously came back the next day. I only suggest spending money on a massage if you have something important that you would like to feel good for. I've rambled enough now, but if even one thing I've said helps you it was worth it because headaches suck. One more thing. Light sensitivity- anytime you can get away with wearing sunglasses, do. Maybe even turn down brightness on computer and phone screens you use. BEST of luck.
Posted 3/20/2013 6:58 PM (GMT 0)
I'll look into yoga, I really need a way to calm down the stress in my daily life.

Thanks A LOT Mima, just knowing that there's someone out there that has been through this helps me feel that there is hope. I think it may be due to some neck muscle that's really contracted since I remember when it started I had just changed my pillow.
Like you both have said, since it's nothing ''serious'' as in medically life threatening then I can find a way to manage it slowly. I think I'll still eventually see a neuro to get some anxiety meds for when I need them but definitely not right now.

Is anyone aware of what the medical term for this headache is? Traveling chronic screw your life up headache would be perfect :p
Posted 6/11/2013 9:50 AM (GMT 0)
Hi @mima and @hsaadh

I have just registered to this web after reading your both experience on this particular headache. I am glad to know that there are others out there wherever you are having exactly the same thing like I do in my head. Like @mima experienced when no one believe me when I say this pain presence 24/7, when I sleep, work, awake, exercise, it is literally every second of my life. Most of them show me their questioning eyes, and also I lost my energy to explain to them nor I don't know where to start telling.

This also happen whenever I see a new doctor and/or neurologist as I have to start all over again, they start examine me all over again from zero and still come out clear at the end. There were times of frustrating. Lucky me to have a daughter who understands my head condition. We use the term of "1 to 10" where is my pain stage, as it is there all the time, it is just the level stage changes in every hour. But when it comes to the utmost pain, my pale face, easily exhausted, when she notice those symptoms she usually ask me on what level is my headache. I do hope both of you have someone to share your pain.

I have tried numerous of medicines then I gave up, not to mention the cost as all neurolog meds are expensive. Now I just consume Paramex which contains propyphenazone, paracetamol and dexchlorpheniramine, in simple it is a pain killer. I take it like 3-4 times a day or more when the pain attacks much harder. It does not make the pain go away, but at least it helps minimize it for the next 2 hours or so before it comes back again.

Oh also, I hardly sleep at night, some nights were even sleepless, for many years ever since I have this painful headache. So I take sleeping pill at night to help me pass through one night at a time. Only we know exactly how we hate "the thing" is killing in our heads.
Posted 6/13/2013 9:15 PM (GMT 0)
Hi Everyone! Happy thursday to you all! : )

It pains me to see people going through such hard times, I'm sorry to hear youre suffering so much : ( My friend Karlie had migraines for years too but hasn't had one in about 3 years, off all medications and everything. I'd love for the chance to share her story with you and see if it could do anything for you : ) shoot me an email, take care and many blessings!

Alan
[email protected]
Posted 10/13/2013 5:42 AM (GMT 0)
I was having almost the exact same symptoms... get tested for Epstein-barr virus (mononucleosis). I was having extreme head pressure for months and couldn't figure out why. I guess mono can cause some weird symptoms.
Posted 10/24/2013 12:04 AM (GMT 0)
Not sure if this will help you but the remedy available here has been very good for my migraines http://gentlyheal.com/

I also use their insomnia medication to good effect.

Don't give up hope - keep searching until you find a solution.
Posted 10/24/2013 3:26 AM (GMT 0)
I know I keep posting this but I feel it's a very important issue - aspartame and artificial "sweeteners", ie toxins, in our drinks and food. Aspartame induces 92 side effects, that is not a typo, 92. Headaches/Migraines is one, also dizziness/vertigo. So what is aspartame? It's a loosely labeled "safe" sweetener but it should never have been approved by the FDA. It's in 6000+ food items now - from gum, to mints, to some baby food, to some baby formula, light yogurt, anything labeled sugar free or fat free is highly suspect, read every single label if you want this chemical out of your system. It hides under so many names, phenylalanine, Nutra Sweet, Amino Sweet, Acesulfame-K or Ace, Aspartic Acid, Equal, Equal Measure.

Just google aspartame and headaches, you'll see lots of links to read.

It took me losing 50% of my hearing in my L ear, overnight, and being diagnosed with Cochlear Meniere's Disease to question why this happened to me. When I told my ENT specialist I have had headaches and migraines for 42 years, he said to avoid migraine triggers and my meniere's might be better managed. He was right, I eliminated all traces of any artificial sweetener but especially aspartame from my diet. I eliminated caffeine as well.

And now I no longer have headaches. I used to wake up with one each day, without fail. Not anymore.

Water is my beverage, 3 quarts a day.

Give up aspartame and see if you feel better.
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