Is Head Pressure CSF Leak, Rebound Headache, Occipital Neuralgia, or Other???

Okay so I have been posting on this board for the last week but never really told my story. I am 23 male and live at home with my rents. Iam in great health exercise 5 days a week and have recently changed my diet to headache /candida diet, though i prob have more sugar than I should, I mean its in everything. I am working part time for ESPN which I love but this constant headache I have had saps all my energy. It started about three months ago with brief tingling in my face and arms/dizziness (anxiety attack) while driving home from work. I thought I was having a heart attack and went to the ER. They diagnosed orthstatic hypotension, wehn I stand up I get dizzy. They gave me a bunch of fluids but dizziness remained. I don't know when but it turned into more of a head pressure a few weeks into all this. I have got MRI (heand and neck) CT scans, ENT evaluation, heart halter test, mouth guards for TMJ everything comes back fine. I should also mention that I was taking Straterra(for ADD) and suboxone(painkiller) both for about a year and a half. when this started happening I got off both medications as I thought they were causing my problems. I had this strange pressure for about 3 months and was beginning to think I was just in a bad cycle of anxiety (thats what all the doctors were telling me) when I saw a headache specialist. He strongly believes I have a CSF leak?? ***?? The reason he thinks this is that the pressure is slightly reduced while laying down. I really notice a difference in the pressure when I get up in the morning. Sometimes when I wake up I think it might be gone but then I stand up and oh it's back. I am beggining top feel more and more that this is muscle related somehow. Like I feel its coming from the back of my head near the occipital area which feels kind of numb. The doctor tells me these CSF leaks heal by themselves so I kind of what to wait it out to see what happens. One thing I can say is that it is better than it was 4 months ago though my neck is more stiff. And this pressure is still driving me nuts!!

So could this be a rebound headache from the medications? Could it be anxiety? I don't feel anxious anymore I have kind of accepted my fate but maybe the muscles need time to heal? What about this neuralgia. Is this something that could just happen all the sudden one day? The doctor suggested a lumbar punctyre to see if they can find the leak but there is only a 30% chance they would. I would like to stay away from my spine until I have tried more muscle therapy. I have done deep tissue massage, accupuncture, chiro for 3 weeks. Maybe that stuff is slowly helping but its hard to say. Neuro put me on 50 mg Amytriptiline and 15mg Amrix(muscle relaxer for the time being) that at least seem to loosen my neck up a bit but the pressure is still there. My symptoms were hard to describe at first because of the medications I was on. Withdrawing off suboxone was not fun. I feel very tired and I wonder if this has to do with this head pressure or maybe some post accute withdrawal from the sub?? I try to stay positive but is tough. Sometimes the pressure will be so bad Ill just lay in bed and cry. 1 good thig that did happen to me was last week I felt 50% better for 3 days. I have no clue why. Maybe the muscle relaxer, maybe I was drinking more caffeine, wo knows? Its all so frustrating trying to figure out a headache that doesn't go away. I highly doubt some weird disease and a csf leak makes me skeptical but who knows. I meet with a top headache specialist at Georgetown Univ next week. I wll go armed with questions! There is prob a lot more I could tell you about symptoms and some different things that have happened to me but this is the basics. I really hope this is related to the medications I was on cause than it should just go away. Anyone feel similar, have similar stories, or have any clue what this might be please let me know. I have done so much research on headaches the past month I fell I am more informed than many of my doctors! Thanks guys hope you all are doing well and I def understand what you are going through.

"God won't take me to, what he can't take me through"

Alright rooster could you put your email address in your profile?  I just left my email address here but took it out because I decided against it, as google searches can pick those things up.

I can say there are some similarities in the origin of yours and mine.

I have also been trying the candida diet for about a week but already starting to slip from it, because I don't even know if I have yeast overgrowth, and it's tough to keep doing something that probably won't even work.

Post Edited (Batman55) : 2/25/2009 12:12:16 AM (GMT-7)

i have been suffering from similar issues. i have had a headache everyday for nearly 2 years. they are always one sided and it varies on location, sometimes pain in my eye, forehead, side of my head. i have had a CT and off course normal, i am a nurse and was willing to go to alternative therapy if possible, ive tried acupuncture, massage, heat therapy, ultrasound therapy, muscle electro therapy, with not even a little improvment. my doctor thought it might be tension from work but i took 3 months off and went to relax in flordia and again no improvement, so i can rule that out. i dont have migraine pain, its not like i am in my room in the dark because it is so painful, but is still just as interfering with daily life. i am currently on indomethacin 3 times a day,which works well but that is hard on your liver and kidneys if taken long term so i cant stay on that forever. i have to say my doctor has not been very aggresive with treatment, i dont think people understand what it is like to have a headache everyday. its depressing. i long for the days when i didnt have to remember to bring my medication out with me when i go out with my friends, it is always the first thing on my mind when i wake up. i think what the worst part is not knowing a direct cause, i find myself having random panic attacks when i think that i am going to have a stroke one day or drop dead, and also the non stop thought that i am only 28 and i may have a headache everyday for the next 60 years. its scary. im glad there are others out there who can understand.

hi all am new here so plz bare with me. i have similar symptoms 2 a few ov u i have posted a thread, thanks 4 all ur time an help, rooster 4 yrs ago i was diagnosed as having 2 tia's mini strokes in 2 wks as i had tingeling numbness in my head face arms. they did ct scan an found a shadow on my brain on the lert hand side forehead, i was having alot ov pressure here also. they said it was probs due 2 bleed on brain. i had a repeat ov this about 6 mnths ago they then did mri an said it wasn't a tia whats all that about? so what the hell was the shadow then?. the pressure is so intense i just wanna cry with it, but that just makes it worse ironic eh lol. when the pressure starts if i lay down straight away it's usually ok, but if am busy and cant do this it goes on 4 days an i cant even feel sorry 4 myself, just got 2 lay there quiet as a mouse an so still looking at the ceiling or wall behind me as this gives a small amount ov relief. it fools u tho ya think its gone stand up and wham its back with a vengance. just wish i new what it was. 1 ov u asked me if caffine helps, why? is this important? i've never really noticed 2 be honest, i,ll give it a try next time. not sure if it was injury related as i said on my thread cant recall when it started just that it was yrs ago. what is a fluid leak and cause? plus are there any other symptoms, cures? i dread the nxt flare up but it helps knowing i am not alone. wish i sort ov was tho in a funny sort ov way as i wouldn't wish this pressure on my worst enemy. may god give us all strenght 2 carry us through our suffering. i have none at all i am fatigiuged constantly my thoughts are with each and every 1 ov you may u all have a pressure free day thanx again guys an gals

I have had a headache for 9 months now.  I had never had headaches of any type before in my life.  It started with a headache that was every minute of every day and was only temporarily relieved by lying upside down on an inversion table. Intermittently with this headache I developed some migraine headaches. 

After seeing a neurologist and a pain management neurologist, it was determined that the first headache type was due to a spontaneous CSF (cerebral spinal fluid) leak.  Spontaneous CSF leak can occur from something as small as a bad sneeze.  I received a epidural blood patch on Oct 2nd 2009 and was relieved of the every minute of every day headache within 10 days.   My pain management neurologist stated that the epidural blood patch may not work because his experience has been that spontaneous CSF leaks are usually found in the thoracic region and we would have to do another blood patch there.

After the blood patch, I was left with the intermittent migraine that worsens with changes in barometric pressure and my menstrual cycle.  I had a Mirena IUD removed 11/22/09.  The number one reason for removal of a Mirena IUD is migraine headache onset.  Since it was removed I still have migraines most days but not the type that send you to the hospital.  I have also kept up my caffeine intake (1 Starbucks tea or cappuccino works better than a bunch of sodas) and started taking magnesium supplements.  The hormones from the IUD can stay in your body for up to 6 months, so I am hopeful they will be done by May 2010.

I feel pretty good most of the day now but can have a few days in a row where it gets bad.  I have stopped working and stopped planning ahead because I just don't know how I will feel.  I am much much better in the last few months, and that was enough for awhile.  Now I am at a plateau and want to work to feel even better.

I am now researching the theory I may have Celiac disease.  There can be a certain body type and other symptoms.  I plan on going to my doctor with this new theory in the next 2 weeks.  My advice is to be your own advocate, educate yourself and follow your instincts.  Keep pushing to find a doctor that will listen to you and help you follow your instinct.

I get pressure in my head when my neck is out of sync. Perhaps checking with a chiropractor.

Dear irish2411,

Please let us know if you ever do find a way a relieving the pressure, or a diagnosis, etc.

I'm as stumped as the rest of you.  My head pressure is 24/7 and seems to get a little worse every year.

Dear Bobby,

I will be anxiously awaiting any news you can bring us on your brother's situation.  We've all had this problem long enough, especially me, I've had it for six years straight... every day... practically 24/7.  For me it seems to get a little worse every year.  It has done enough harm to my cognitive functioning as well as several other areas.

lemme know,

Batman

It's hard to believe we are all suffering from the same headaches, have seen many doctors, done all kinds of treatments and taken tons of meds and no one has an answer to our pain.
I am a 52 year old female, part time nurse but on my second sick leave from work due to the headaches. My headaches started ten years ago. Right now it has been over two years of constant pain, 10/10, every minute of every day. I have been mostly in bed with ice packs on my head to try to keep my sanity. I am very depressed and I can't really see an end to the pain. It consumes my life. I pray all the time for strength and courage to continue this fight. I am my own advocate and I continue my fight to find an answer to my painful life. Thank God I have an extremely supportive husband. Right now i am looking into seeing an iridologist. Please google this and tell me what you think. My appt is on Wed. so i will report back with the findings. I have a friend who also has had ten years of headaches and started feeling better after seeing this doctor. So i am anxious to see him this week.
Just to let you know, you can also have a look on the chronic pain forum. It's a great bunch of people with differents pain but of the chronic nature and you can get so much support there. come on over and check us out. I love the family of friends I have there. You can vent all you want and you will get tons of support.
I too am having a heart work up done to make sure I do not have a PFO. I will talk to my doc about the CSF leak as well.

Talk soon. Wishing you all a low pain day. Please try ice packs for your pain, they sure help me get thru the day.

Hugs

Dear Head Pressure,

     I too have had a pressure in my occipital lobe and it has affected my eyes a tad and my skull.

     I am aware of spiritual ways of connecting with headaches (ex. Louise Hays). They represent a disconnect between yourself and some truth. Maybe you can go back to when you just got the headache and find some event that triggered it.

     Specifically occipital headaches represent a disconnect between yourself and your past and a spiritual truth from that past. It is wonderfully easy to heal even if in practice it seems difficult--meditate for a while on this pain and what spiritual truths it is scared of.

    Usually these seperations from truths are just inabilities to forgive ourselves and accept what has happened and see how higher up it is all allright.

    I know I certainly will be doing this for this headache to heal it.

    Best of luck to you, you are not alone,

              aj

hi there,

you are responding to a very old thread which has members that no longer post here

i would suggest starting your own thread and introduction and perhaps you will get a better response.

take care

suzane