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Topic: Newbie Sufferer (Read 459 times) |
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pamc
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Hey all, just found CH and I'm very grateful this is here. I'm going on week 7 with my current bout of pain and my primary care physician is pretty baffled.
History:
Got my first migraine when I was 14, but had no idea what is was. Became really sensitive to light and smell, but not sound, oddly.
Didn't have another until I was 18, was misdiagnosed as a sinus headache at first and put on Percoset.
Finally got diagnosed as a migraine, got taken off the Percoset, went through the joys of rebound headaches, but thank god for my step mom who recognized the problem and got me on Imitrex.
After about a year or so, I found myself having nasty panic attacks from the Imetrex. This was prior to an official statement from the manufacturer that panic attacks are a known side effect. Got to live the wonderful joys of being called a malingerer (to put it nicely) by local ER staff.
Moved from the Midwest to the West Coast where my symptoms lessened (far fewer allergens for me out here).
Sypmtoms steadily increased over the next 5 years in duration and intensity.
This past year:
Migraines coming two to three times a week, lasting one or two days. Pain is usually managable with Cafergot and/or Tylanol. (On pain scale its usually a 5 or 6, where 10 is the worst kidney stone I've had.)
Current situation:
Going on week 7. Been to the ER 5 times in one week. Seen my physician 3 times.
Pain has been as bad as 10, never better than 4, save for 7 random PFD with no rhyme or reason.
Have ruled out rebound headaches... but haven't quite figured out what's going on. Migraines? Clusters? Status Migranosus? No idea...
I'm not well enough to take care of myself. I am unemployed and can't collect unemployment insurance. I've filed for SSI, but that's going to take at least another 100 days to kick in, if they accept me. My dad's been helping me with rent, but he can't afford that much longer and I may have to move back home. My boyfriend was able to get 2 weeks leave to take care of me (he's in the Navy) but he leaves this weekend.
I am so terrified, and I don't know what to do.
What's been tried:
-Beta-blockers (no result)
-Antidepressants (no result)
-Magnesium (no result)
-Cafergot (somewhat helpful, but attacks are too frequent to use this on my needed basis)
-The triptans (bad side effects- either panic attacks, vasomotor rhinitus aggrivation, or PVC aggrivation)
-Midrin (PVC aggrivation and blackouts)
-Narcotics (work, but can't be on for long due to rebound)
-Steroids (no result)
-Tylanol (no result unless exceeding RDA)
-Ibuprophin (no result unless exceeding RDA - can't use too often due to kidneys)
-allergic to asprin (hives)
Currently trying
Verapamil, with no noticed result so far
Symptoms
-sensitivity to light, smell, sound, movement (varies in severity per attack)
-hurts bilaterally, unilaterally, all over, throbbing, stabbing, sudden, etc. etc. (varies in severity, location and behavior per attack)
-pain will move
-tightness in shoulders, neck and jaw as a result of clenching against the pain
-intensionally hurting other parts of my head/body will help aleviate some of the intensity of pain
-difficulty thinking, concentrating, making decisions
-loss of fine motor control in hands
-tremors
-will wake me from sleep, invade my dreams, keep me from sleep
-if an attack happens in my sleep, by whole body will shake
I guess that's about it... enough, huh?
-Pam
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Ted
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Re: Newbie Sufferer
« Reply #1 on: Mar 7th, 2003, 12:47pm » |
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Hey Pam. The duration tells me right off it's not clusters. You say the pain lasts for a day or two, while clusters last from 1/2-4 hours. Have you had an MRI? The tremors you mention can be something to worry about (or not). Seek out a neurologist who is knowledgable with headaches and hopefully he'll give you a correct diagnosis.
In the meantime, in case it's migraines you might want to try O2 anyway. I know a few migraineurs who said it helps them too. YOu'd need a non-rebreather mask and take it in at a flow rate of 8-12 liters p/minute. But the most important part is getting the neurologist and an MRI.
www.headachesupportgroups.com deals with all sorts of different types of headaches if you want to check them out. We won't really be able to help much here because this is a place where we specialize in only clusters.
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suzy617
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Re: Newbie Sufferer
« Reply #2 on: Mar 7th, 2003, 12:53pm » |
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Hi Pam and welcome.
Just from some of the things you stated I would have to say they are not CH in my opinion only.
First off, over the counter drugs do nothing for CH no matter how much you take.
Under symptoms, you state you have the pain all over. CH is limited to one side.
Also the duration as Ted explained.
Good luck to you, I hope you find some answers.
suzy
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pamc
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on Mar 7th, 2003, 12:47pm, Ted wrote:Hey Pam. The duration tells me right off it's not clusters. You say the pain lasts for a day or two, while clusters last from 1/2-4 hours. Have you had an MRI? The tremors you mention can be something to worry about (or not). Seek out a neurologist who is knowledgable with headaches and hopefully he'll give you a correct diagnosis.
In the meantime, in case it's migraines you might want to try O2 anyway. I know a few migraineurs who said it helps them too. YOu'd need a non-rebreather mask and take it in at a flow rate of 8-12 liters p/minute. But the most important part is getting the neurologist and an MRI.
www.headachesupportgroups.com deals with all sorts of different types of headaches if you want to check them out. We won't really be able to help much here because this is a place where we specialize in only clusters. |
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Yeah, I wasn't sure, but my doctor mentioned clusters and I have symptoms of both migraines and clusters...
I've had an MRI, nothing abnormal there. Also did 100% O2 with little effect: I stopped spiking into the 7-pain range, but it didn't take the pain below 5.
I'm meeting with a neurologist later this month, hopefully sooner.
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cootie
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Re: Newbie Sufferer
« Reply #4 on: Mar 7th, 2003, 12:58pm » |
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Ah yeah I'd definetly try for an MRI and different avenues causein the pain.....esp with the tremors and shakeing deals......that could be really serious.....good luck to you.....I'd seek a good nero if possible fer answers. Pam-Coots-that's-also-a-Pam-but-not-the-same
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| « Last Edit: Mar 7th, 2003, 1:01pm by cootie » |
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Lori
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Re: Newbie Sufferer
« Reply #5 on: Mar 7th, 2003, 3:07pm » |
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Glad you had a MRI but I think it would be in your best interest to seek an appt with a neuro. Also did you use the 02 with the non-rebreather mask and take it in at a flow rate of 8-12 liters p/minute? That could make a difference if you don't use it right. It's worth a shot.
Good luck to you!
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Blessings and PFDAN,
Lori
Psalm 23:4 ~ Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.
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Karla
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Imitrix causing axiety
« Reply #6 on: Mar 7th, 2003, 3:50pm » |
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If the vepramil doesn't work for you try adding lithium and see if that helps. It works for some here.
Also thanks for the info on imitrix causing anxiety. I was having horrible problems with anxiety attacks while I was doing 6 imitrix ns a day (40mg-80mg) for a long time. I never thought that the imitrix could be causing the anxiety. The anxiety stopped about 5 months ago. I thought maybe the methadone I just started taking had done something to relax me or something so I wasn't having the anxiety attacks anymore. But now that You mention imitrix I also quit using Imitrix at the same time I started using methadone. So maybe the imitrix was the guilty culprit. Hmmm.
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Karla
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cootie
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Re: Newbie Sufferer
« Reply #7 on: Mar 7th, 2003, 5:07pm » |
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Oh duh.....you said you'd had an MRI....I missed that sumhow.....sorry......Pam-duh-is-me-Coots
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pamc
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on Mar 7th, 2003, 3:07pm, Lori wrote:Glad you had a MRI but I think it would be in your best interest to seek an appt with a neuro. Also did you use the 02 with the non-rebreather mask and take it in at a flow rate of 8-12 liters p/minute? That could make a difference if you don't use it right. It's worth a shot.
Good luck to you! |
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I'm not sure... I was at my physician's at the time. I had the face mask (not the nose tubes) and they just let the O2 go full blast.
I became really alert and a lot of my muscle fatigue went away, but the headache didn't.
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pamc
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Re: Imitrix causing axiety
« Reply #9 on: Mar 7th, 2003, 5:39pm » |
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on Mar 7th, 2003, 3:50pm, Karla wrote:| Also thanks for the info on imitrix causing anxiety. I was having horrible problems with anxiety attacks while I was doing 6 imitrix ns a day (40mg-80mg) for a long time. I never thought that the imitrix could be causing the anxiety. |
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It's a rare side-effect, but one nonetheless. I used to panic so bad I'd want to rip the IV out of my arm and leave the ER right now. It was not fun.
What does lithium do? I'm already on Effexor...
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jonny
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Re: Imitrix causing axiety
« Reply #10 on: Mar 7th, 2003, 5:54pm » |
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on Mar 7th, 2003, 5:39pm, pamc wrote:
Lithium is my God!!!!
Lith and Verap have blocked 80% of my chronic clusters from ever showing up.
............................jonny
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kissmyglass
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Re: Newbie Sufferer
« Reply #11 on: Mar 7th, 2003, 6:51pm » |
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Hey folks...does O2 work for other headaches? Or just clusters?
Kev C
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Ted
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Re: Newbie Sufferer
« Reply #12 on: Mar 7th, 2003, 7:27pm » |
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on Mar 7th, 2003, 6:51pm, kissmyglass wrote:Hey folks...does O2 work for other headaches? Or just clusters?
Kev C |
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Damn, I hate repeating myself.
on Mar 7th, 2003, 12:47pm, Ted wrote:| In the meantime, in case it's migraines you might want to try O2 anyway. I know a few migraineurs who said it helps them too. |
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Charlie
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Re: Newbie Sufferer
« Reply #13 on: Mar 7th, 2003, 8:53pm » |
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Hi Pam:
You say these things wake you out of a sound sleep? Is the pain so intense that you cannot get back to sleep or sit still? That is what clusters do. Maybe you really have clusters and migraines. You need to find out exactly.
In any event, until you're sure, stick around. Others here know more than I.
Charlie
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pamc
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on Mar 7th, 2003, 8:53pm, Charlie wrote:Hi Pam:
You say these things wake you out of a sound sleep? Is the pain so intense that you cannot get back to sleep or sit still? That is what clusters do. Maybe you really have clusters and migraines. You need to find out exactly.
In any event, until you're sure, stick around. Others here know more than I. |
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The more I read, the more I think I may have both.
The headaches that wake me from a sound sleep do keep me up. Sitting up is less painful than lying down. Sometimes if I press on the point of my head where it hurts, that will alleviate some of the pain. It's a sharp stabbing pain like someone driving an ice pick into my skull...
But then I also have the headaches that build slowly and throb. Plus I'll get the stabbing and throbbing in combination. Not fun...
We'll see what the neurologist says at the end of the month.
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Ted
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Re: Newbie Sufferer
« Reply #15 on: Mar 7th, 2003, 11:44pm » |
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OK, that's fair. I don't know what's fair but whatever it is, that's fair. Pam, people give us a bunch of shit because sometimes we come right out and say you don't have clusters. We're called mean and evil pricks for being so forward, though we do try and point people in the right direction when we do say it. So, we sit here and try and think of how to put things to appease the people who would rather say a stubbed toe is a CH while gently telling those "It's a stubbed toe. It's not a CH!" But sometimes you just have to say what's what. You do not have CH. I'm sure you were told you do have CH but you do not have CH. You are suffewring from a painful condition and I'd be happy to talk to you about it and through it. But it is not clusters. I'm not saying this to be mean, elite or anything else. But you will not get help here looking for treatments. You might get hugs, but is that going to relieve your pain? Do you want to be painfree or filled with hugs? We really can't help you. But, off the board, if you want to talk about your suffering, I will talk to you about it.
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pamc
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on Mar 7th, 2003, 11:44pm, Ted wrote:| OK, that's fair. I don't know what's fair but whatever it is, that's fair. Pam, people give us a bunch of shit because sometimes we come right out and say you don't have clusters. We're called mean and evil pricks for being so forward, though we do try and point people in the right direction when we do say it. |
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Ya know... I'm not surprised you're called a mean and evil prick. Are you a doctor? Are you *my* doctor? Do you know my medical history beyond what I've told you? No...
So why don't you back off a second.
My headaches follow neither the formula for migraines or cluster headaches. The only thing we've been able to rule that they are not are tension headaches.
I'm looking for answers, not antagonization.
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cootie
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Re: Newbie Sufferer
« Reply #17 on: Mar 8th, 2003, 3:23am » |
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Could you be gettin SHADOWS inbetween clusters........could that be the other headaches you mentiond ?? I dunno....just a thought from all I am tryin ta read and figure out.........shadows or rebound heaches.......I jus donno.....too much beer makes me fuzzy........hic.......hmmmmmm.........hey it's Friday nite so WTF.......Pamm-Coots-that-has-a-beer-buzz......am I makein any sense here.........prolly not.....hic.....goodluck to ya tho........have a prane fwee nite.....hic.....Pam-dumb-cootie-gonna-shad-dup-now..........hic........ . 
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Ted
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Re: Newbie Sufferer
« Reply #18 on: Mar 8th, 2003, 10:55am » |
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Nope, I'm not a doctor, though I do know more than most about CHs. And I don't need to know your medical history. Just your symptoms. Headaches that encompass your whole head and last a day or two aren't clusters. I'm not so sure you're looking for answers, but just one answer: That you've got clusters, otherwise you wouldn't get so defensive and feel antagonized when someone tells you it's not clusters but they'd be willing to talk to you about your pain if you needed it anyway. I guess I can understand where you're coming from. Many of us became frustrated while searching for years for just what's causing the pain and just wanted an answer and not a dead end.
Dr. Evil Prick, MD
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cootie
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Re: Newbie Sufferer
« Reply #19 on: Mar 8th, 2003, 11:02am » |
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Ted....you have an alias......Dr. Evil Prick specialize'n in antagonization ? Cool......... ;D Pam-Coots-sober'd-up-now
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hulkman1
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Pam,
I went through similar circumstances with my headaches until I was finally diagnosed and treated with the usual and customary medications.... I'm sorry to hear that your pain episodes last so long--I thank God that mine are very short!
I seem to get my headaches on Saturday mornings and the underlying pain starts Wednesday. I think there is alot about Cluster headaches that we still don't understand.
Believe it or not, massage helps a great deal for me as well as biofeedback techniques. Some specific forms of Chiropractic adjustments have helped, too.
have you ever been tested for Multiple Sclerosis? Your symptoms seem a bit similar. I doubt that' s what you have but it's worth the investigation.
Don't give up though--keep at it and try other alternative measures...I think your're worth it!
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Opus
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Re: Newbie Sufferer
« Reply #21 on: Mar 9th, 2003, 11:01am » |
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Pam,
Sorry to hear of your situation. I sounds like you started with Migraines that are changing to clusters. This can be called Migraine - Cluster syndrome. I started with clusters but now they have migraine attributes such as nausea and 6 hour length. This is called Cluster - Migraine syndrome.
Try this link.
http://www.clusterheadache.org/library/general/ch_general.htm
The treatment for this syndrome is usually Beta blockers.
Here is a link for nomed treatments.
http://www.clusterheadaches.org/resources/non_script_treat.htm
Also try to sleep in a upright position.
Hope this helps.
Opus
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pamc
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on Mar 9th, 2003, 11:01am, Opus wrote:Pam,
Sorry to hear of your situation. I sounds like you started with Migraines that are changing to clusters. This can be called Migraine - Cluster syndrome. |
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I think your right, especially with my attacks in the last 48 hours. I've been taing steroids, which take care of the throbbing, all-over pain of a migraine. However, I'm still getting stabbing pain: short bursts of pin-point pain that last a few seconds individually, but that occur off an on over an extended period of time. My typical migraine pain seems to build steadily, while this is sudden.
Thanks for the links! I'll check those out.
on Mar 9th, 2003, 11:01am, Opus wrote:| The treatment for this syndrome is usually Beta blockers. |
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I think we've already tried Propranolol, but I'll double check with my Dr.
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| « Last Edit: Mar 9th, 2003, 10:52pm by pamc » |
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Opus
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Re: Newbie Sufferer
« Reply #23 on: Mar 10th, 2003, 7:13am » |
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on Mar 9th, 2003, 10:11pm, pamc wrote:
I've been taing steroids, which take care of the throbbing, all-over pain of a migraine. |
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Steroids are frequently used to stop a cycle.on Mar 9th, 2003, 10:11pm, pamc wrote:
However, I'm still getting stabbing pain: short bursts of pin-point pain that last a few seconds individually, but that occur off an on over an extended period of time.
Thanks for the links! I'll check those out.
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These new pains may be CPH, which has short pains like CH but with more frequency. see this link. It sounds like you have mutiple ha types.
http://www.clusterheadaches.org/comparison_table.htm
CPH is treated with Indomethacin which may cut down your pain. The short stabs may be CH or Migraines reaction to the steroids so I would not add any meds until the steriod taper was done. There are other resources on OUCH but I can't find them now and I am getting hit .
OPushttp://www.clusterheadache.org/library/general/ch_general.htm
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