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Excrutiating 5-week long headache with no relief.
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Excrutiating 5-week long headache with no relief.

Hello, I'm Jennifer. I'm 19 years old and for the last 5 weeks, I've been experiencing an excruciating headache that is non-stop, and have had no relief.

Basic history: I've suffered from migraine headaches for over 6 years. At first I would have a migraine once every few months that would go away after sleeping in a quiet, dark room, and minimizing exertion. About 3 years ago, I was diagnosed with mycoplasma pneumonia and viral meningitis. I was in the hospital for 8 days with an absolutely excruciating headache which the physicians on my case attributed to an LP complication. When I had the LP done, the resident had a difficult time getting the spinal fluid. The first puncture was contaminated with blood, and they had to re-do the puncture. Apparently, the holes didn't seal up and was causing an LP Headache. After being released from the hospital (Nov. 2005) my migraines continued to get worse. They increased in pain, duration, and in frequency. I basically gritted my teeth and bore it despite how limiting it was to go to school and work a job. Late November/December of 2008, I was to the point of having a migraine 2 times a week, every week, and was recommended to see a gynecologist at the possibility that these are hormone-related. For four months after my gynecologist appointment, I was (and still am) on Seasonique and experienced NO migraines. I would get an occasional stress-headache, but unlike my migraines, 2 tylenol would help it tremendously.

Note: I have an allergy to Aspirin/Ibuprofen products, and when taking these products I experience swelling of the throat and lips and severe itching accompanied with swelling.

Now, on to why I'm making this post!

5 weeks ago, on Sunday March 15, I was feeling pretty horrible and had a headache, but it didn't feel much like a migraine. I laid down to take a nap at about 4PM, and when I wake up, it's well after 10PM and I'm in bed with my boyfriend extremely worried. I had apparently gotten up and passed out, completely cold, in the hallway. I had no recollection of even waking up. My headache was so intense I could hardly stand it, and I had notice that 90% of my vision was obscured by black static that wouldn't go away no matter what I did. I was very nauseous and had a tense and stiff neck/back. I simply tried to go to sleep because I felt exhausted. I slept until 1pm the next day, and still felt horrible, with no help from tylenol. That day, we went to the emergency room. They did a CT scan to check for brain bleeds and bruising and said the CT was clean. They gave me Demerol, Phenergen, and a prescription for 2mg tablet steroids, phenergen, and vicodin. While I was on Demerol, I experienced a blood pressure drop from 127/78 to 102/60. The physician who treated me released me with the diagnosis of a concussion, and that I had fallen due to getting up too fast, causing extreme vertigo from a blood pressure drop, and fainted. I didn't agree with the diagnosis, but I had no other choice.

The next day, I was taking the maximum recommended dosage of the vicodin (at first I was taking as little as possible because phenergen usually only takes the edge off medication-related nausea) and was getting NO relief whatsoever. At about 1am on March 17, I was vomiting profusely and unable to hold down any fluids. By the time I got to the ER, I was dry-heaving, and was having a hard time keeping balance. The pain was so intense I could hardly focus and was constantly crying. The physician ordered some blood tests, a lumbar puncture, a urine pregnancy test, and put me on an IV to prevent dehydration from vomiting. All tests were normal/negative. She felt that the problem was neurological and ordered me to get an appointment the next day to see a neurologist.  ----- The pain I was experiencing was bilateral and in two locations. I was experiencing my usual bilateral pain location from migraines, but instead of a throbbing, it was just an intense ache and pressure. On top of that, I was experiencing intense pain in the very back of my head.

I saw the neurologist the next day, and they were only interested in treating my symptoms rather than finding a root cause. I was sent home with a prescription for Ultram and Carisoprodol. Neither helped over the next few days. Carisiprodol aided in falling asleep, but I still wasn't experiencing refreshing sleep. The neurologist referred me to a physcial therpaist to work on/relieve the tense neck, which could have been causing some of my headaches, or at least make them worse. The neurologist told me to return in two months.

The physical therapy would help with the back-portion of my headache through electric muscle stimulation, massage,  icing, and general stretching. However, it wouldn't touch the more intense bilateral part of my headache. I still go to physical therapy 3 times a week to this day.

On April 7, right before easter, I was re-referred back to my neurologist by my therapist due to lack of significant improvement. At this point, I was no longer taking any pain medication except Carisiprodol to aid with muscle stiffness and nerve pain. I was put on Frova and Gabapentin (Neurotnin). Since taking these medications I've felt nothing but worse; I experienced an increase in pain, and a new symptom of sensitivity to light and increased sensitivity to sound. And on the 13th or 14th, the neurology office called in a prescription for Methylprednisolone, as a last "resort" to break the pain cycle. Additionally, I've felt worse since taking the medicaton. My joints and muscles have been aching including my eyes, my headache now has an additional throbbing sensation that is very intense, and have felt worse in general. For the duration of this time, my vision has slowly gotten better and is almost back to normal.

To this day, I still have the headache. It's been over 5 weeks, and undoubtedly the WORST headache I have ever had, not to mention the most intense pain I've had. I do have another neurologist appointment tomorrow, but my therapist predicts the doctor will only change medication rather than find reasons why my headaches are continually getting worse.

Help! 5 weeks of intense pain has been driving me crazy and pushing me to my limits mentally/emotionally on myself and my significant other. I've had to withdraw from my university because I cannot trust my poor sense of balance, decreased mental awareness and cognitive function while being in a kitchen with sharp utensils and hot pans/appliances/ovens.

I tried to be as thorough as possible, and it's taken me 2 hours to type all this. x.X I hope I didn't miss anything.
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3 Comments Post a Comment
Avatar n tn
I totqlly know what your going through...well my husband does. He has had an excrutiating headache constantly for the past three years with absolutly no relief. We have seen 5 different neurologists and non of them can figure out what is causing them or for that matter give him any relief. Nothing works. He has been on every med possible.....preventative to pain killer and NOTHING!.He has lost 80pnds from vomiting at least 3 times a day, he is hardly out of bed because the pain is so bad. He is on long term disability because he hasnt been able to work since last year. You would think that someone would figure this out...but as of this far nobody has. If you hear anything please let me know...he will try anything.
Avatar n tn
I totally know what your going through...well my husband does. He has had an excrutiating headache constantly for the past three years with absolutly no relief. We have seen 5 different neurologists and non of them can figure out what is causing them or for that matter give him any relief. Nothing works. He has been on every med possible.....preventative to pain killer and NOTHING!.He has lost 80pnds from vomiting at least 3 times a day, he is hardly out of bed because the pain is so bad. He is on long term disability because he hasnt been able to work since last year. You would think that someone would figure this out...but as of this far nobody has. If you hear anything please let me know...he will try anything.
Avatar m tn
I have recently been introduced to a brand new enemy. I thought the

dreaded "Migraine" was bad, let me introduce you to the WORST of

ALL! The "Cluster Headaches" also known as the "Suicide Headache"

no joke.

For the past month now, daily up to 12-15 per day, for 90 min.- to

3 hours or more!, literally as if someone takes a hot iron from the fire,

and jabs you through the eye, and out of your skull!

I see another Neurologist today, they have not ruled out some other

things, pending a upcoming M.R.I. as I had the C.T. already.

I turn ALL the pain over to Jesus!

When I feel I can't take the pain, He gives me a break,

Having worked in the Medical field, I know that God ALONE!

is the Ultimate Healer!

Never stop praying to Him!

When I am weak, We are strong!  Jesus in me. Amen.

Cluster headache:

"Cluster headache, nicknamed "suicide headache", is a neurological disease that involves, as its most prominent feature, an immense degree of pain. "Cluster" refers to the tendency of these headaches to occur periodically, with active periods interrupted by spontaneous remissions. The cause of the disease is currently unknown. It affects approximately 0.1% of the population, and men are more commonly affected than women.

Cluster headaches are excruciating unilateral headaches[1] of extreme intensity.[2] The duration of the common attack ranges from as short as 15 minutes to three hours or more. The onset of an attack is rapid, and most often without the preliminary signs that are characteristic of a migraine. However, some sufferers report preliminary sensations of pain in the general area of attack, often referred to as "shadows", that may warn them an attack is imminent. Though the headaches are almost exclusively unilateral, there are some documented as cases of "side-shifting" between cluster periods, or, even rarer, simultaneously (within the same cluster period) bilateral headache.[3] Trigeminal neuralgia can also bring on headaches with similar qualities. However, with Trigeminal neuralgia the pain is mostly located around the "cheek" area and is described as being more lance-like in quality.
[edit] Pain

The pain of cluster headaches is markedly greater than in other headache conditions, including severe migraines; experts have suggested that it may be the most painful condition known to medical science. Female patients have reported it as being more severe than childbirth.[4] Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented:

    "Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."[5]

The pain is lancinating or boring in quality, and is located behind the eye (periorbital) or in the temple, sometimes radiating to the neck or shoulder. Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck, or sometimes having a leg amputated without any anaesthetic. The condition was originally named Horton's Neuralgia after Dr. B.T Horton, who postulated the first theory as to their pathogenesis. His original paper describes the severity of the headaches as being able to take normal men and force them to commit suicide. From Horton's 1939 paper on cluster headache:

    "Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief."[6]

Indeed, cluster headaches are also known by the nickname "suicide headaches".[7]
[edit] Other symptoms

The cardinal symptoms of the cluster headache attack are the severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes, if untreated, and the attack frequency of one to 16 attacks in 48 hours. The headache is accompanied by at least one of the following autonomic symptoms: ptosis (drooping eyelid), miosis (pupil contraction) conjunctival injection (redness of the conjunctiva - the covering of the eyeball), lacrimation (tearing), rhinorrhea (runny nose), and, less commonly, facial blushing, swelling, or sweating, all appearing on the same side of the head as the pain.[8] The attack is also associated with restlessness, the sufferer often pacing the room or rocking back and forth. Less frequently, he or she will have an aversion to bright lights and loud noise during the attack. Nausea rarely accompanies a cluster headache, though it has been reported. The neck is often stiff or tender in the aftermath of a headache, with jaw or tooth pain sometimes present. Some sufferers report feeling as though their nose is stopped up and that they are unable to breathe out of one of their nostrils.
[edit] Cyclical recurrence and regular timing

Cluster headaches are occasionally referred to as "alarm clock headaches", because of its ability to wake a person from sleep, and because of the regularity of its timing in that both the individual attacks and the clusters themselves can have a metronomic regularity; attacks striking at a precise time of day each morning or night is typical, even precisely at the same time a week later. This has prompted researchers to speculate an involvement of the brain's "biological clock" or circadian rhythm.
[edit] Episodic or chronic

Want to know what it's like to live with cluster headaches? Read below...

"...I've seen him walk down the hallway (holding onto the wall for dear life) with his head cocked to one side and walking like a 100-year old man. I've seen him cry, pull out his hair, and beg me to take him to the emergency room. On one occasion, I was driving the hospital - in the middle of the night - with 2 daughters in the back seat and he's practically pushing the dash of the car through the windshield because I'm not driving fast enough - and he's crying all the way. I know that he will do ANYTHING - ANYTHING to get rid of this pain. I can't believe that most doctors don't realize this - maybe they'd like to spend a couple of nights at my house and see what he goes through !!!

When he's having the series of headaches he won't sleep because he knows that he will wake with another one - what a terrible, scary feeling! Thank God I don't suffer from these headaches - but I feel so helpless when it comes to comforting him. After a while it starts taking it's toll on me and our children. I dred for the night to come - since that's when most of his headaches recur and we start all over again!"

- Loretta (wife of a sufferer)

To All who Suffer Headaches, May God Bless US ALL! Give Us ALL

the additional strength, courage, and rest, when we need it! Amen.
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