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I hope someone gets some relief from this (Read 696 times)
Maha
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I hope someone gets some relief from this
May 26th, 2013 at 2:08pm
 
Hi All,

Last year I was was diagnosed with a brain aneurysm and was lucky enough to have the surgery before it ruptured. Shorty after the surgery I started getting these very painful headaches on one side of my head that were ridiculously painful. All of you already know what they feel like. I thought this was normal since I had just had brain surgery. But then I started waking up in the middle of the night with what I called a 10 on a scale of 1 to 10. I went back to my neurosurgeon and then neurologist and headache specialist and no one could figure out what was wrong with me.  Attack after attack, day in and day out. This was killing me. One day I looked into my medicine cabinet and I found a drug that I used in my past for back pain. It's an anti inflammatory called Napralen 375mg. I figured if I have swelling on my brain maybe this will help and reduce the swelling and I can get a good nights sleep.  That was the first time I slept even though I did dream that night without having that attack and trust me I am a CH patient, I would not take this drug during the day because at the time I didn't think I could take that much. I finally did so much research and told these doctors I thought I had cluster headaches and they agreed. They tried steroids/verapamil/lithium/imitrex and numerous other drugs without going into details. I was hospitalized a few times. Remember they took me off the naprelan while they had me on these other drugs. Finally I had my sons video me during one of my attacks and I sent it to my neurosurgeon and begged him for help, He took one look at the clip and called me. He said in all his years as a surgeon he has never seen anyone have this outcome after surgery. My attacks were a 10 every day 3 or four times a day. I was desperate and suicidal after 8 months. He asked me to come in and get yet another mri/mra and do spinal tap. Once they gave me they spinal tap of course I had a spinal leak and four days later------------BLOOD BATCH. Guess what happened after the blood patch? No cluster headaches for five weeks. I had not had any relief for eight months. What the heck do you suppose happened? Someone should look into that. The only other thing that it could possibly be is the doctor added Naprelan back into my schedule 2 times a day 375 mg and Caffeine pills 2 times a day. Unfortunately I still get them but on scale of 1 to 10 they are a 3 to 4 and they are a few times a week and I am no longer suicidal. I read that spontaneous spinal leaks could be the cause of many migraines. Could they be the reason for our CH as well? This is a very painful problem and as strong as we are they should have come up with a solution to this already. I think of what it was like fo me last year and I start choking on my tears. I don't know how I made it this far. I swear I don't!
I really hope maybe someone can tell their doctor about this mix of drugs and maybe it will help them.
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Brew
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Re: I hope someone gets some relief from this
Reply #1 - May 26th, 2013 at 3:27pm
 
It's Aleve - naproxen sodium.

Very few around here get relief from NSAIDs like this.
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nani
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Re: I hope someone gets some relief from this
Reply #2 - May 26th, 2013 at 5:39pm
 
Hi. Like Bill said, probably not the naproxen. I think I would skip the spinal fluid leaking, unless I had no choice. pf wishes.
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Maha
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Re: I hope someone gets some relief from this
Reply #3 - May 26th, 2013 at 8:14pm
 
Hi All,

This is the side effect that was recently found from Naprelen. I think this is why it worked for me. A doctor started looking into why it was working for me. Who knows just throwing it out there.

Information sourced from AHRQ:
Evidence-based guideline update: NSAIDs and other complementary treatments for episodic migraine prevention in adults. Report of the Quality Standards Subcommittee of the American Academy of Neurology and the American Headache Society.
Holland S, Silberstein SD, Freitag F, Dodick DW, Argoff C, Ashman E. Evidence-based guideline update: NSAIDs and other complementary treatments for episodic migraine prevention in adults: report of the Quality Standards Subcommittee of the American Academy of Neurology and the American Headache Society. Neurology 2012 Apr 24;78(17):1346-53.
[Free full-text Neurology PDF | PubMed® abstract | National Guideline Clearinghouse version online]
[EXCERPTS]
Major Recommendations
Level A. The following therapy is established as effective and should be offered for migraine prevention:
•Petasites (butterbur)
Level B. The following therapies are probably effective and should be considered for migraine prevention:
•NSAIDs: fenoprofen, ibuprofen, ketoprofen, naproxen, naproxen sodium
•Herbal therapies, vitamins, and minerals: riboflavin, magnesium, MIG-99 (feverfew)
•Histamines: histamine subcutaneous (SC)
Level C. The following therapies are possibly effective and may be considered for migraine prevention:
•NSAIDs: flurbiprofen, mefenamic acid
•Herbal therapies, vitamins, and minerals: Co-Q10, estrogen
•Antihistamines: cyproheptadine
Level U. Evidence is inadequate or conflicting to support or refute the use of the following therapies for migraine prevention:
•NSAIDs: aspirin, indomethacin
•Herbal therapies, vitamins, and minerals: omega-3
•Other: HBO
Level B negative. The following therapy is probably ineffective and should not be considered for migraine prevention:
•Leukotriene receptor antagonists: montelukast
Clinical Context
In a previous epidemiologic study, 38.7% of study participants had ever used a migraine preventive treatment, of which only 12.4% were current users and 17.2% were coincident users (taking a migraine preventive treatment for other reasons). The proportion of those who use nonsteroidal anti-inflammatory drugs (NSAIDs) or individual complementary treatments specifically for migraine prevention is unclear at this time, and is a topic which warrants further study. Additionally, the treatments reviewed herein are those available in the United States. In other countries, treatments may not be available commercially or may be available in other dosages or in other preparations or combinations. Therefore, the results from this and other guidelines are limited to those treatments available in the United States.
Additionally, studies assessing the efficacy of NSAIDs and complementary treatments for migraine prevention are limited and should be considered relative to other available pharmacologic therapies reviewed in a separate guideline. Silberstein and colleagues report divalproex sodium, sodium valproate, topiramate, metoprolol, propranolol, and timolol are effective for migraine prevention and should be offered to patients with migraine to reduce migraine attack frequency and severity (Level A).
Additionally, the clinical evidence for NSAIDs and complementary treatments for migraine prevention should be reviewed with caution because there are clear discrepancies in how patients were selected for study inclusion; how severe, frequent, or disabling their attacks were; and how severity was assessed. Also, these treatments are unregulated. There are few or no studies on how these medications should be taken—specifically relative to dosing strategies and coadministration with other prescription pharmacologic treatments. When patients are instructed or choose to take NSAIDs or complementary treatments for migraine prevention, it is important that they be followed over the course of treatment so dosing and titration modifications and adverse effect (AE) risk can be monitored. Prospective long-term safety of many of these agents is not well studied specifically regarding their use as preventive migraine treatments.
It is reasonable also for clinicians to inquire about the doses being used and frequency of use of NSAIDs and complementary treatments. Frequent medication use or high dose levels may increase the risk of headache progression or medication overuse, which may lead to other secondary health complications (e.g., gastrointestinal upset/bleeding with aspirin or NSAIDs or headache rebound with discontinuation of feverfew). Complete review and disclosure of coexisting conditions are warranted, as complementary or pharmacologic therapies taken for coexisting conditions (e.g., depression) may exacerbate headache. Because migraine is frequent in women of childbearing age, the potential for adverse fetal effects related to migraine prevention strategies is of particular concern. Little has been done to establish the long-term safety and efficacy of these agents during pregnancy or breastfeeding.
Additionally, when patients have unlimited access to over-the-counter medications, they may be unaware of the continued need for routine physician follow-up for a chronic illness such as migraine, as illness severity may progress or improve, often warranting medication changes (see table e-1 of the data supplement [see the "Availability of Companion Documents" field]). It also is important for patients to understand the magnitude of benefit that can be expected from preventive migraine therapies; moreover, patient education about migraine and appropriate management is important in successful patient care. For some patients, a 35% reduction in headache frequency or intensity may be deemed an insufficient level of improvement, thus leading them to risk dose escalation. Additionally, patients with migraine may need to be educated about appropriate use and risks of these agents.
Finally, recent studies suggest that some medications used for migraine may offer long-term protection against headache progression whereas other agents may elevate progression risk. Specifically, one epidemiologic study assessing medication use in the general migraine population reports that aspirin or ibuprofen use may protect against progression from episodic to chronic headache conditions. In contrast, opioid use was positively associated with chronic headache conditions. Although conclusions are preliminary regarding the benefits and risks of selected agents for long-term use, studies suggest that these agents may play a significant role in headache progression and patterns, lending further emphasis to the importance of following patients closely, including regular assessment of NSAIDs, and other complementary treatments for migraine prevention.
Classification of Recommendations [and Evidence] [available online]
Patient Resources
NSAIDS and complementary treatments for migraine prevention in adults. AAN summary of evidence-based guideline for patients and their families. St. Paul (MN): American Academy of Neurology. 2012. 2 p. Electronic copies: Available in English and Spanish in Portable Document Format (PDF) from the American Academy of Neurology (AAN) Web site.
[Link to full-text guideline: Neurology PDF | National Guideline Clearinghouse version online]
NGC Disclaimer
The National Guideline Clearinghouse™ (NGC) does not develop, produce, approve, or endorse the guidelines represented on this site.
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