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confused about imitrex tablets (Read 2078 times)
kimberlylarae
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confused about imitrex tablets
Aug 20th, 2010 at 6:55pm
 
Hi, I'm new. My doctor gave me imitrex (Sumatripran Succinate Tablets 50mg) to take at the first sign of a cluster headache. Reading about the drug today from the company is said "It's important to keep taking the medication it won't work if you stop using it." I get 9 tablets at a time and the doctor told me not to take more than 3 tablets a week. I get a cluster headache at least once a night, last night I had 2. I would never take more than one tablet a day. The first 9 days of this cycle I took one every day at the start of a headache. Then stopped a few days and had no pain, then Sunday had the worst pain ever.  I know as soon as I go to sleep I will get a headache so for a few nights I took an Imtrex right before sleep and slept all night with no pain. I didn't have any side effects at first, but the other night (Wednesday) my chest got very tight and it scared me. Now I'm afraid to take it and haven't taken any since Wednesday night. Today I slept as much as possible and plan to stay up tonight and drink coffee. That was the usual plan of attack before I started medication. And it might have to be again. When they happen all I can do is drink scalding hot tea (it seems to do something as it comes in contact with the roof of my mouth and often shortens the pain) and hold the hot cup on my face where it hurts most, pressing really hard. (Of course, now that I've actually told this the old devil may take away even this much comfort, they don't call him evil for nothing). My
doctor is in a different town and won't do much over the phone. I don't see her until October. I've been getting these headaches for about 10 years but wasn't diagnosed until about a year ago in April. I take Verapamil 120mg every night and my usual one a year winter attack didn't come and didn't come in the spring so I was very hopeful that I had them licked. But not so. I've never had them in the summer before. I have Fibromyalgia and I'm heat resistant. It's been very hot and I cleaned my bathroom top to bottom and became so heat sick and totally exhausted that I think it started this cluster cycle. They used to last about 2 weeks, my last one lasted about 6 weeks. What I don't go through for a clean bathroom. These things are pure evil and have to originate in the bowels of hell.
Interesting that they seem to have something to do with a problem in the nervous system--so does Fibromyalgia and they started about the same time the Fibromyalgia did. My nerve endings have been just crazy from the Fibro this summer causing itching, picky feelings and creepy crawly feelings that are very common with Fibro. It has something to do with pain messages that get goofed up.  It feels like the nerve endings are turned up too high--like a stereo that is too loud, just blasting. Fibro may be an inflammation of the nerve endings and it may be auto immune, so says the research. So might cluster headaches. And now the headaches start during this awful itching non-stop all summer. Not too many women get clusters, but most Fibro victims are women.  Hmmmm. You know, I'm just too tired to put it all together right now. And I have a long night ahead.


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Linda_Howell
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Re: confused about imitrex tablets
Reply #1 - Aug 20th, 2010 at 7:39pm
 
I'm going to try to take each point one at a time here.  There will be others who can chime in at any time.



Quote:
confused about imitrex tablets
Today at 5:55pm     Hi, I'm new. My doctor gave me imitrex (Sumatripran Succinate Tablets 50mg) to take at the first sign of a cluster headache.

Normally the pills do not work for us.  They take far too long too take effect and by the time they get into the bloodstream...the HA is winding down anyway. 50mg. is on the low side anyway and they work best for people with Migraines, not CH.

Reading about the drug today from the company is said "It's important to keep taking the medication it won't work if you stop using it." I get 9 tablets at a time and the doctor told me not to take more than 3 tablets a week. I get a cluster headache at least once a night, last night I had 2. I would never take more than one tablet a day. The first 9 days of this cycle I took one every day at the start of a headache. Then stopped a few days and had no pain, then Sunday had the worst pain ever.  I know as soon as I go to sleep I will get a headache so for a few nights I took an Imtrex right before sleep and slept all night with no pain. I didn't have any side effects at first, but the other night (Wednesday) my chest got very tight and it scared me.


Normally we take injections or nasel spray of Imitrex as these are fast acting.  I've never had a problem with it but some DO say that they get a slight reaction like you've described and it passes.  If you have a heart problem...you may want to think about something else, but Imitrex used properly is safe.



Now I'm afraid to take it and haven't taken any since Wednesday night. Today I slept as much as possible and plan to stay up tonight and drink coffee. That was the usual plan of attack before I started medication. And it might have to be again. When they happen all I can do is drink scalding hot tea (it seems to do something as it comes in contact with the roof of my mouth and often shortens the pain) and hold the hot cup on my face where it hurts most, pressing really hard. (Of course, now that I've actually told this the old devil may take away even this much comfort, they don't call him evil for nothing).

he majority of us use cold.  Cold contricts the vessels and arteries and that is exactly what we need to abort.  If heat works...and I've never understood that, keep it up.

My
doctor is in a different town and won't do much over the phone. I don't see her until October. I've been getting these headaches for about 10 years but wasn't diagnosed until about a year ago in April. I take Verapamil 120mg every night

That is such a low dose as to be almost insignificant.  Some folks here  go as high as 940



and my usual one a year winter attack didn't come and didn't come in the spring so I was very hopeful that I had them licked.

   
There is no cure.  There is proper treatment and good ways of dealing with this condition.a



But not so. I've never had them in the summer before. I have Fibromyalgia and I'm heat resistant. It's been very hot and I cleaned my bathroom top to bottom and became so heat sick and totally exhausted that I think it started this cluster cycle. They used to last about 2 weeks, my last one lasted about 6 weeks. What I don't go through for a clean bathroom. These things are pure evil and have to originate in the bowels of hell.

good anaolgy.  lol

Interesting that they seem to have something to do with a problem in the nervous system--so does Fibromyalgia and they started about the same time the Fibromyalgia did. My nerve endings have been just crazy from the Fibro this summer causing itching, picky feelings and creepy crawly feelings that are very common with Fibro. It has something to do with pain messages that get goofed up.  It feels like the nerve endings are turned up too high--like a stereo that is too loud, just blasting. Fibro may be an inflammation of the nerve endings and it may be auto immune, so says the research. So might cluster headaches. And now the headaches start during this awful itching non-stop all summer. Not too many women get clusters, but most Fibro victims are women.  Hmmmm. You know, I'm just too tired to put it all together right now. And I have a long night ahead.

I have no informastion on Fibro, but I want you to go here to see exactly what is happening with CH.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register;  [color=#0000ff]scroll down and start reading. 


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Re: confused about imitrex tablets
Reply #2 - Aug 20th, 2010 at 9:11pm
 
Oxygen!!!!! You'll hear this a lot. An attack starts, 6-10 minutes later I'm pain free just by huffing 02. A 32 year sufferer here and nothing compares to the speed and consistency of oxygen. Read the oxygen info tab on the left and fire away with any questions you come up with.

The verapamil dose, as Linda mentioned, is way low. There are other prevents you can try if your condition prevents going up with verapamil, talk to your doc about Lithium and Topomax.

Welcome to the board, let's get you out of pain as quick as we can!

Joe
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Re: confused about imitrex tablets
Reply #3 - Aug 20th, 2010 at 9:27pm
 
Welcome to the board Kimberly!  I am sorry you had to seek us out but glad you found us.

Linda and Joe gave excellent advise. 

From what I read here it seems your Doc doesn't know too awful much about CH or at least proper treatment for it, but I could be wrong, wouldn't be the 1st time.

As Linda and Joe said your verapamil dose is VERY LOW and at that dosage I doubt it's going to be of much help.  I would request a referral to a headache specialist or if that fails print out all the info you can from here on CH and it's treatments See O2 Page and the imitrex tip page to the left.  You may not want to show the imitrex tip to the doc, but at least you'll have it, when you need it.

I Hope you find some relief soon!
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Chad
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Re: confused about imitrex tablets
Reply #4 - Aug 20th, 2010 at 9:42pm
 
I'll send you the tabs I have.   I don't need them anymore. The reason I don't use them anymore is because of OXYGEN.  No need to ever take an abortive again if you have O2.  Read everything on this site about it and if your doc doesn't give you the script,
look into welders O2.  We are here to help.

Best of luck!

-Chad
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Art S
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Re: confused about imitrex tablets
Reply #5 - Aug 20th, 2010 at 9:49pm
 
Sorry you had to join us Kimberlylarae,

Yea the imitrex pills just don't work fast enough, never did for me.  Linda pretty much hit the nail on the head on her .  Joe as well, O2 is a godsend for me.  120mg of verapamil is not enough.  I'm on 480 now and still getting hit.  I've been as high as 960 before they would slow down.  Everyone is a little different.

Sounds to me like you need to help educate your Dr a little about CH.  There's a wealth of info in here you can print out and present to him.  It's helped me with my Doc.
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Bob Johnson
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Re: confused about imitrex tablets
Reply #6 - Aug 21st, 2010 at 11:31am
 
Until your situation is stabilized, I'd like to see you with a more assertive HEADACHE specialist, not a general neurologist, etc. This delay until October is not helpful for acute problems like Cluster.

If you have the option:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
====

Linda is giving you some sound suggestions!





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bejeeber
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Re: confused about imitrex tablets
Reply #7 - Aug 21st, 2010 at 11:58am
 
I'll just pile on here and agree that the pills are too slow.

The injections work for me with no side effects, and the imitrex tip found at the link to the left of this page has been a godsend for me.

I use O2 as a first line abortive and reserve 1/2 dose injections for a back up just in case the O2 doesn't work (which would be most likely with my peak cycle night time hits).

This approach, combined with a preventative, enabled me to experience zero full length, full intensity hits during my last 2.5 month episode.

Next time (if there is one, I'm taking the clusterbusters.com approach for prevention now), I'll try Batch's PH balancing suggestions and hope that the O2 will then be effective 100% of time.


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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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kimberlylarae
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Re: confused about imitrex tablets
Reply #8 - Aug 21st, 2010 at 12:16pm
 
I'm anxiously reading all my replies and learning a lot. Thank you so much!  I will look for a headache specialist. I've learned much about CH in the past few years but not a lot about treatment. I was aware that some find relief with oxygen. I'm thinking oxygen and/or the nose spray.

It's so nice to find people who really know what I'm feeling.
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Bob Johnson
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Re: confused about imitrex tablets
Reply #9 - Aug 21st, 2010 at 1:35pm
 
O.K.; some basics about treatment: PDF file, below.
===



Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
===

A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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Re: confused about imitrex tablets
Reply #10 - Aug 21st, 2010 at 8:48pm
 
Quote:
Next time (if there is one, I'm taking the clusterbusters.com approach for prevention now), I'll try Batch's PH balancing suggestions and hope that the O2 will then be effective 100% of time.


I was optimistic once myself, I may not wait till next time...
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Kate in Oz
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Re: confused about imitrex tablets
Reply #11 - Aug 24th, 2010 at 10:47am
 
Hey Kimberly, just wanted to jump in and say hi and welcome.  I suffer from fibromylagia too and have wondered and googled to see if there was some sort of link b/w ch and fibro but haven't come across any conclusive info. 

If you can get oxygen I highly recommend it!  I've used verapamil on and off over the years but must say it really affects me badly in terms of fatigue - which as you know can be a real issue anyway. 

If I can be of any help whatsoever please feel free to PM me - by the way I don't take anything med wise for the fibro - I just try to live within my limits and not stress to much if things don't get done.  As far as the pain goes, well I can't imagine a day without it.  And I think it's just a myth that people wake up feeling refreshed in the mornings  Tongue  my son has become quite use to the fact that I often need a nanna nap during the day  Wink

Anyway, wishin you all the very best,

Kate

BTW I use hot - hot water bottle on the head - don't deal at all well with anything cold!!
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« Last Edit: Aug 24th, 2010 at 10:50am by Kate in Oz »  
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