Permanent Headache

I have read some of these posts, so sorry If you a...

2013-05-19T16:48:56.275+01:00

I have read some of these posts, so sorry If you already discussed this. I had a headache for 76 straight days that was the big bang. It has been almost 2 yrs since. Its intermittent now and not as bad as it was before. I have to tell you this, because the posts I have read are saying IT CANT be a leak. Uh yes it can. CSF leaks cause Intercranial Hypotension... thus the headache gets better lying down. HOWEVER, it can also cause symptoms of HP.. which is the opposite Intracranial Hypertension. You can even flucuate between them on the same day. You do not have to be between 40-60 yrs old. AND You dont have to have had any kind of accident. CSF Leaks are not understood by 99% of ALL doctors. You need to see a specialist. Try Dr. Schievink in LA or Dr. Linda Gray at Duke. You can send your info and images to them and they will talk to you over the phone. I would say you have CSF Leak over Lyme. CSF leaks are misdiagnosed all the time.

We are trying tru wellness in Bloomingdale il...th...

2013-05-07T18:08:55.939+01:00

We are trying tru wellness in Bloomingdale il...this is the first time we have seen any result change with krissi headache.her headache went to a 6 after just a few weeks...we are doing physical theropy.chiropractor and acupuncuter at this location. She is on no medication due to the fact that medication does not help.I wanted to leave this here so that it may help someone else means it helped us to releve some of her headache. It's never been a 6. Sleazy 8 ,9,or 10 everyday and all day long

My 15 year old has had Occipital Neuralgia for 16 ...

2013-05-06T12:31:12.809+01:00

My 15 year old has had Occipital Neuralgia for 16 months. His life has changed dramatically. As his mom, I share his pain. We have tried medications, nerve blocks, chiropractors, and physical therapists. My observation is the combination of blocks & physical therapy was best to date. As his pain is escalating again, may be time to go for another nerve block. If I hear of anything that "eliminates it for good," I will certainly post it. My heart and prayers go out to all of you.

Hi all. I just read this post and thought to mysel...

2013-05-02T14:31:55.544+01:00

Hi all. I just read this post and thought to myself: oh god.. there are others going through the same then. -right now I haven´t got much energy to read very far but you guys know how it is. -after 3 years of headache of every day (something most people just havent got a slightest clue of what its like) I´ve had MRI´s (3 now), X-rays of sinuses and head,and all sorts of blood tests and it all comes back negative. I would pay everything I got if only there was any certainty of the results but so far the medical endeavors have been all in vain.. so how would I all of a sudden start believing again? -For me the worst disapointments are the doctors that say you will get better and put me on another medication and charge 120€ for it. Because at that point I already know nothing was achieved and I need to come back in another month or so. For some reason getting nada results from the other therapists doesnt bug me so much since I never believed in them much in the first place -I just get a kick of paying to see a hypnotherapist who wants me to describe the pain with a color and go plant flowers in it. (did that ever work for anyone?) I used to go to see a doctor thinking that I pay this fee in order to get better but now seeing a doctor is like making a mandatory social visit to your inlaws, apart from the money. -Anyways.. I shouldnt be flooding on someone elses blog everythign I feel but I wanted to say my thanks to the writer: you are not alone. In the beginning I was worried I would die of this headache but now I am just worried what if it doesnt. -Noora, Finland

My 13 year old daughter has had a headache since 9...

2013-04-30T02:46:48.772+01:00

My 13 year old daughter has had a headache since 9/12/12. Medicine doesn't work. Physical theropy doesn't work .we are going to try acupuncture next week. She has seen quite a few doctors and its the same . They say they can fix her and then nothing resolved. 3 neruo general doc. 3 different er docs. Rheumatologist . Testing so far ekg emg. MRI. Ct. Spinal tap..Only results was a positve Ana and high.. and a non blocking cyst in the third vertical. Told from all nothing to worry a out. The headache specialist has recomened diamond headache clinic inpatient. If the acupuncture doesn't work I guess its next. I do not think that doctors do not understand when you say headace everyday from when you wake up tell you sleep means...it means it doesn't go away.. all I want is for her headache to go away. I hope someone finds an answer to this.

I failed to mention that i was also just recently ...

2013-04-28T22:42:27.241+01:00

I failed to mention that i was also just recently diagnosed with Meniere's Disease.
That explains all of the pressure in my ears and the ON explains the pain.
I was looking for one solution to why i was miserable and in the end have found that i have 2 conditions that have converged on my left ear.
It turns out a low sodium diet helps back off the Meneire's symptoms.
Just 3 days ago my Neurologist give me 4 shots in the back of my neck. The shots with the Cymbalta and the Nucynta have me almost 100% pain free today!
I am hoping that the shot thing lasts for a very long time because i haven't felt this alive in a year and a half now.

I have been dx'd with a large leak. I too am o...

2013-04-28T17:08:15.087+01:00

I have been dx'd with a large leak. I too am on Verapamil and it has helped. This was given to me from a neurologist Before the leak was found. My doctor who is a well known CSF Leak specialist does not know why Verapamil is working. No where ANYWHERE does it say that it raises CSF pressure. That is the first thing I did... look online to see if it does. So where did you find it? Where did you get that info? Thanks.

I could fill a book if i tried to cover what i hav...

2013-04-28T07:33:46.452+01:00

I could fill a book if i tried to cover what i have been through in the last year and a half.
I started out with my left ear feeling 'popped' and there was a bit of an ear ache.
I ended up at an ENT who did a CT of my sinuses and recommended a septoplasty and cleaning out of pollups.
I had that surgery. The recovery was about the worst thing that i ever experienced.
After 6 weeks of recovery, I could tell that I not only still had the earache, but it was worse.
He recommended that I see a dentist about TMJ.
I had months of being bounced between ENT's and Oral Surgeons, each pointing me to the other.

Then I saw a neurologist who diagnosed Occipital Neuralgia. First she put me on Lyrica and Nucynta. The Lyrica made me insane and had me hallucinating.
Then we tried Neurontin which had me as dumb as a brick.
I am a self employed computer programmer and I don't earn a living when I'm dumb.
Then she had me try Cymbalta and it was like a light switch. That with the Nucynta and i had 2 months of life back.
I don't know what is happening, but now the headaches and earache are breaking through that and it's coming back, which scares the hell out of me.

Reading these posts has also scared me because I'm only at 1.5 years. I can't imagine having this as long as some I have read here.
It has also given me some hope that there are some possible treatments.

I discovered what my IIH is due to. All my docs &...

2013-04-21T16:46:47.830+01:00

I discovered what my IIH is due to. All my docs & neuro said no, it is IIH. IIH is just a symptoms, but what causes it?

I was able to figure it out because so many people in my neighborhood had various symptoms & we all had one thing in common. We were all bit by ticks.

When I started treatment, then the bacteria spread from the blood brain barrier & to the rest of my body & I finally developed other Lyme symptoms. Meanwhile I had headaches & IIH for YEARS before.

I have since then discovered others who had IIH & who also tested positive for Lyme. Lyme is not just one bacteria, but many different kind & it can be spread through fleas, horse files, sand flies, some mosquitots, ticks, & other biting insects. It is becoming a BIG EPIDEMIC. Everywhere I go people are getting it & suffering.

Have you seen an LLMD and got tested for Lyme? I h...

2013-04-10T19:17:12.068+01:00

Have you seen an LLMD and got tested for Lyme? I have had a headache for a year. Doctors in Texas hung up on me when I asked them to test me. I just wanted to go to every kind of doctor imaginable to figure out why I have this terrible headache. Only 40% of people remember a tick bite, see a tick or have a rash. I don't remember any of it. I just know I'm sick. My blood work came back and boom. Lyme. It's incredibly controversial and incredibly prevalent in the US, all over. Not just the east coast. I would seriously look into it. I saw your post about it but it's from several years ago I think. Just trying to help a fellow daily headache sufferer out.

Yes, I have! It seemed to have a more optimistic o...

2013-04-08T21:11:48.572+01:00

Yes, I have! It seemed to have a more optimistic outcome than the second session. The physio advised having an x-ray taken of my neck as he still seems to be pretty sure something is out of place. Got the x-ray done and handed it to him. Now waiting to hear back. Will definitely post again once I know further.

I hope your headache gets better - any ideas as to what yours is? - and that this blog has helped you in some way. Thank you for reading.

Have you had your third session yet? Curious what ...

2013-04-06T11:15:21.716+01:00

Have you had your third session yet? Curious what the results were. I'm a fellow headache sufferer - 4 years now.

Hey NYCrocks! I'm very curious to hear more ab...

2013-04-06T06:22:06.081+01:00

Hey NYCrocks!
I'm very curious to hear more about your reactions, I just took propolis for the first time and woke up with a chronic neck ache. i feel like i woke up with a severe case of whiplash. I've never had any allergic reactions to bee products before. very weird.

Hello. After suffering for about a year with ON, ...

2013-04-02T22:42:33.802+01:00

Hello. After suffering for about a year with ON, I had RFA done at a headache/pain clinic in Northern California. It has been just over 3 weeks and things are slowly improving. I still feel a little off and dizzy quite a bit, but the pain has diminished greatly.
I'm still very cautious of how this is going to play out, but I'm optimistic that they know what they are doing. I'm scheduled for Botox injections in about a month if the RFA doesn't work. I just wish I could get some decent relief from how sore my neck is all the time.
I very rarely take pain killers, but I have found that the low grade anti-depressants like Elavil have really taken the edge off the headaches on a daily basis. It also takes the edge off my going insane. I'm only on 50 mg, but I'm convinced it makes a huge difference.

I think this is why most doctors set low expectati...

2013-03-31T23:10:11.750+01:00

I think this is why most doctors set low expectations, so the can exceed them. You frequently hear about stories where doctors told someone "they'll never walk again" and then they do walk again. I always wonder if the doctors just say that because it's the worst case scenario, whereas there is a potential that someone will walk again and they just don't say it in case the patient doesn't get there. Starting out with "there's a 95% chance I can cure you" sets the bar really high, so I wonder why he'd even say that.

I have HC and went through the usual rotations of ...

2013-03-31T05:32:54.718+01:00

I have HC and went through the usual rotations of different meds and wrong diagnosis before figuring it out. Topamax and indocin, and my life is fully livable. I can tell the left side of my head feels a little different, but I can cope. It's worth asking a doctor about if you haven't yet. The relief after years of not having the right med combination is amazing.

There is literally not a single peer reviewed stud...

2013-03-30T12:22:09.749Z

There is literally not a single peer reviewed study that conclusively links autism and vaccines. The original article by Wakefield was discredited for flawed methodology and for being funded by a company that wanted to sue the vaccine manufacturers. Feel free to try to prove me wrong.

You do, however, consume more mercury in one can of tuna fish than you do in all your vaccines combines. Fact.

Whatever you do for your health, just don't do it in the name of bad science.

I've had my headache for about three years now...

2013-03-30T11:59:58.756Z

I've had my headache for about three years now, and same as you, I don't talk about it as much anymore. Or at least I don't tell everyone. It's partially because its better managed now, and it's partially because I learned... Everyone is suddenly a headache expert when you have a headache, and nobody has a fucking clue.

Oh, you're going to tell me to take excedrin? For a headache I've had for 8 months? You think I didn't think to try a drug called 'the headache medicine' on day two?

The diagnosis I eventually landed on was hemicrania continua. This was after it being called cluster headaches, CPH, SUNCT, trigeminal neuralgia, and being told by a few doctors to just 'exercise and drink less caffeine and it will all go away.'

Three years. I passed the three year mark a week ago. It's mostly under control with a combination of seizure meds and anti-inflammatories, but I wake up every morning with a headache that most people will never understand. So I just choose silence.

I'm still reading through your blog, I hope you've found some relief.

Having been successfully treated for occipital neu...

2013-03-17T21:00:47.992Z

Having been successfully treated for occipital neuralgia with a nerve block, I would strongly advise anyone with headaches to see a neurologist who specialises in headaches. I cant emphasise enough to get one who specialises in headaches, rather than just a general neurologist or one who specialises in other areas.

Hi I suffer chronic constant headaches pulsating ...

2013-03-14T14:59:02.309Z

Hi I suffer chronic constant headaches pulsating throbbing and tension in the head. My headaches started around 20 from then on it has destroyed my life unable to hold down a steady job i struggled through life. I have not yet met anyone in the medical profession who truly understands the destruction this constant pain has caused me. The strange thing is I feel ashamed to talk about it, people just look at me bemused when i try to explain the constant pain. Hope you find some solution.

Steve

Wow, I wish I had found this blog when I was diagn...

2013-03-12T16:30:38.128Z

Wow, I wish I had found this blog when I was diagnosed with this 3 years ago!

I was 22 and about 40lbs overweight. My lumbar puncture showed an opening pressure of 550!!! I had an awful permanent headache, that also got worse when laying or bending down. (This, I was told, is just a matter of gravity. Some of the csf that lives in your spine moves up to your head.) I had tunnel vision, and double vision. I heard my heartbeat in my ears all the time. And half of my face was paralyzed for a week.

It took a while for the doc to find a treatment for me. Went from Diamox (which gave me kidney stones) to Topamax (which made me feel really dumb.. to the point where I was failing some college courses). These meds didn't really help lower my pressure that much, so I decided I wanted to taper them off and try Acupuncture instead. I was amazed at how well it worked!

I strongly urge those of you who are still struggling with IIH to try it! It is now 3 years later, and I am completely IIH free. A good Acupuncturist can help you lose weight, relieve your headaches, and fix the actual source of the problem.

I wish you all the best of luck in your recovery!!

HOW I HEALED MY OCCIPITAL NEURALGIA.... I am a ret...

2013-03-08T02:26:09.030Z

HOW I HEALED MY OCCIPITAL NEURALGIA.... I am a retired stuntwoman and have had alot of trauma to my neck over the years. I have suffered O.N. for the past 2 years, I tried muscle relaxers, massage, injections in neck, chiropractic, all of which helped somewhat but only temporary. The headaches were debilitating, putting me in bed for usually 24-48 hrs and accompanied by vomiting.

Long story short, I have VERY hard water at my house and use a water softener that uses sodium. My water is then run through a reverse osmosis system for drinking. I came to find out that the R/O system was NOT taking all of the salt out of my drinking water. My coffee, tea, juice and just plain drinking water all had salt in them. Over the 2 years that I lived in my home I was being salt poisoned and didn't even know it. When I switched the source of my drinking water to distilled water, my occipital neuralgia gradually disappeared. The salt/potassium ratio is what fires the nerves in the body, and mine was definitely out of balance. It has been 5 weeks with NO incidence of O.N.

I'm sure this isn't the reason all people have ON, but it was a major contributor to mine. I also had high blood pressure which is also slowly coming down. So be sure to limit your salt intake in your diet and see if it makes a difference for you, I also found that aerobic exercise or just plain walking is a huge pain reliever, increasing my circulation, lowering my BP somehow wards off an ON attack.......... I'm so happy to have my life back. I hope you all get yours back too. Blessings...........CC

This blog has been a God-send in terms of helping ...

2013-03-05T15:01:39.815Z

This blog has been a God-send in terms of helping in my
attempts to "figure out" the entire nature of my headaches
Like others, I have run the gamut of physicians, medication, and sundry therapies...to no avail. Unlike the others whose symptoms increase when lying down, mine
intensify when I am seated, particularly on a cushioned
chair.??? but the loss of balance has been gradual and now
a part of the syndrome. Diagnosis was occipital neuralgia,
but with my further research, auricular neuralgia seemed
to better pinpoint the condition, although given no encouragement for a "cure"... I bless you for starting this blog stream, as it has given me inspiration, hope and
the sense I am not alone....I pray you all the solution
and relief you so earnestly seek.

I know you asked Wendy but I thought I might just ...

2013-02-21T15:45:22.365Z

I know you asked Wendy but I thought I might just write my experience. I have had this off-balance feeling continuously and yes the it does hurt when I lie down. In fact movement actually helps, though very slightly. My pain is bilateral and not one-sided.

I too have this off-balance feeling. I often have ...

2013-02-21T15:39:35.815Z

I too have this off-balance feeling. I often have to sit while taking a walk so as not to fall down. Have this persistent headache for 6 years now and it is still going strong.