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luckylady
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curiouser & curiouser
« on: Mar 11th, 2008, 11:15pm » |
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My mom was a big fan of Alice in Wonderland. I find the information on this website a lot like Alice down the rabbit hole.
I use my sign-in name sarcastically. I am one of the "lucky" "few" women to suffer from cluster headaches. I visited this site a few years back and am now amazed at all the new information, as well as how many "few" women are on your site as cluster suffers.
A quick rundown of how I got to be one of the "few". Around age 30, I suddenly got this intense headache on the right side of my head. It started with a hot wire entering into my right ear and down inside my neck. My right eye then seemed to shrivel into my eye socket as the eyelid felt like it had transformed into a bubble-eyed goldfish. My right nostril snapped shut and someone sent a hot shishkabob skewer through the top of my head, while someone else impailed the back of my head with a spear, neatly sliding it just up under the base of my skull, and slamming the back of my head with a steel mallet all simultaneously. I seriously thought I was dying.
Unable to see out of my right eye, unable to focus on things around me, and probably very disoriented in speach, my husband took me to doctor after doctor. No one knew anything. I saw specialists for brain tumors, allergies, a neurologist that said it wasn't a migraine but had no idea what it was. I was tested for parkinsons and adrenal dysfunction. I was given lots and lots of Tylenol 3. (I am intollerant of most narcotics and antihistamines.)
This went on for 3 months. I had one doctor flat out tell me I was faking it to get narcotics. I ended up in bed for 3 days unable to move, cry, talk, sleep, eat. I downed 6 Tylenol 3 at a time.
Finally, my regular doctor returned from maternity leave and told me one of her other patients (a man) had cluster headaches and that is what I had. She immediately took me off of the T3 and put me on a strong anti-inflamitory (Indomethecine, I think). After 3 months I finally had some relief and found out one of my triggers was narcotics.
I have been living with these on a regular basis for 13 plus years now. My "season" is August through September and seems to have something to do with the heat and humidity. I also get them throughout the year off and on.
From the beginning, my headaches have involved an intense sense of smell during the episode. The first time I contacted this site I found no indication that this was a cluster symptom. Throughout the years, my headaches have progressed from strictly clusters (with the intense sense of smell) to cluster/migraine with an occasional basic migraine thrown in for good measure. I detest the sick stomach that comes with the migraine but the headache is a relief in comparison to a cluster.
Most of the medications listed on this site I have never used or even been aware of. I am aware of Imitrex and I use Maxalt. It usually takes an hour and a half for it to take effect once a cluster comes on. (Can't stand the taste, either). When the headache reaches Pain Level 8, per your Kip list, I head to ER for a shot of Torodol. This helps within 20 minutes. I also take 2 Alieve at the onset of a headache. I have used oxygen, which I find helpful at times, other times it seems to have no effect. An airconditioner blowing full force in my face will usually take the swelling away from the eye and sinus.
I have not had another 10 since the initial cluster. Most of the above help in different ways and I have identified and eliminated most of my triggers, at least the ones I can. My biggest trigger is scents - chemicals, COLOGNE, PERFUME, some natural odors such as coffee. Stress, coffee, alcohol (not that I drink, my husband is an alcoholic and I have had maybe 6 drinks in the last 20 years) and tea are also triggers. I actually feel the pressure start to build as I drink tea. My mom was a dental assistant back in the day and she helped me to understand the tea part (it's not the caffiene as I can drink all the soda I want). Back in her day they used tea bags to stop bleeding after an extraction. It seems there is a chemical in tea called tinactic? acid. This chemical causes the blood vessels to contract and stops bleeding. So, my assumption is that when I drink tea (which I never do now) and I feel the pressure building, it is actually the blood vessels contracting.
I was once put on a "preventative", I thought I saw it listed on your site but can't find it now. The stuff was demonic and I thought I was loosing my mind.
Now I just live with them and do what I can with the Maxalt, lots of water, oxygen, Torodol, airconditioning, dark rooms, and lots of prayer.
I found it especially embarrassing when my 18 year old daughter had to drive me in for a shot and I was so out of it she had to communicate for me. It doesn't help that the morons at Kaiser always insist on sticking that stupid flashlight in my eyes.
Well, anyway, that is my story in a nutshell. Perhaps some will find my experience with tea and Torodol helpful, as I saw no reference to them. I have been told that Torodol used to be available in pill form, but they no longer do that. So, it's to the Dr. for a shot in the butt 4 or 5 times a year, but it sure beats the guy with the hot wire, skewer, sword and mallet.
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Bob_Johnson
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Re: curiouser & curiouser
« Reply #1 on: Mar 12th, 2008, 8:23am » |
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Glad that you have shown your flag to us! <bg>
Is there any specific information you need or have you mined lists of meds, sources of docs, etc. from your reading here?
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LeLimey
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Re: curiouser & curiouser
« Reply #2 on: Mar 12th, 2008, 9:47am » |
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hello and welcome from another "lucky" female - aren't we just sooooo blessed?! 
I'm glad you found us, there's a load of help and support here for you and all your family in fact. We'll help in any way we can.
Just out of curiosity was he preventative you tried Topomax or Topiramate as it's also called? Some people have had success with it but I for one count it as the worst experience of my life. I lost all knowledge of "me", it was terrifying.
Looking forward to getting to know you
Helen
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Guiseppi
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Re: curiouser & curiouser
« Reply #3 on: Mar 12th, 2008, 10:37am » |
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Welcome to the board "Lucky!" Sounds like you've run a route all too familiar to many on the board, especially true of our female CH'ers who are just "exagerating" their migrain pain.
Good news is everyone here understands pretty much what you've been thru/are going through. Read up on what's worked here, consider giving some of the previous failed remedies another shot. Many have found their magic bullet through combining prevents, verapamil/litium as an example.
For now, just glad you found us, looking forward to getting to know you!
Guiseppi
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darknight
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Re: curiouser & curiouser
« Reply #4 on: Mar 12th, 2008, 12:48pm » |
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Welcome Lucky Lady!!!
I have myself recently come off maxalt (id had the peppermint strips as well eeewwww) I found they helped smaller attacks but did nothing for big ones sometimes i felt i might as well of taken some paracetamol!! Ive now been on Oxygen for 3/4weeks and that stops them, im episodic so not had a big one yet as my cycle was ending when i got the Oxygen but i was also prescribed imigran injector but yet to try it!!!
Hope u find a more managable way 4 you!!
PFD Si! 
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beachmusic
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Re: curiouser & curiouser
« Reply #5 on: Mar 12th, 2008, 5:20pm » |
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Hi, I am also another female that is happy to meet you. I find your story fascinating. Of course I wish you never had to deal with any of this. I look forward to learning even more about what you know and have been through. We women are in the minority it seems.
I want to know why so many of us have to have clusters and migraines. Confusion is my middle name and yes I am on Dopomax!!!!
Mary Ann
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luckylady
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Re: curiouser & curiouser
« Reply #6 on: Mar 12th, 2008, 5:44pm » |
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Bob_Johnson, LeLimey, Guieseppi, & Darknight ~
Thank you for your responses. No I have not tried Topomax or Topiramate. A lot of the meds I saw listed on the site I have never heard of. I am wondering if they might not be available in the US.
The preventative that I tried was Verapamil. Your "experience", LeLimey, seems to be similar to what I went through on the Verapamil. I am very sensitive to meds and I have a congenital heart condition. The heart condition is not very limiting, but I try to be careful with the meds. My husband calls me a canary because I react strongly to a lot of meds, especially narcotics and antihistamines (who's allergic to an allergy med, right?). They started me on a low dosage of the verapamil, which seemed to be ok, but I was feelling a little foggy after the first few dosages. Then the Dr. upped the dosage and within hours I was feeling very emotional/hormonal. By the next day, I was hysterical and unable to cope. I was even afraid to drive home from work that afternoon. I can't explain it any other way than demonic. It wasn't like I was halucinating, my world was just all crazy and I was unable to communicate with it, literally. The words that came out of my mouth weren't what was in my head. A truely terrifying feeling. I am afraid to try other things.
My first episode was the 3 month period. It was fairly consistant with short bursts of relief. I can honestly say it was my only 10 on the Kip scale, so I guess I can count myself lucky. Then, nothing for about a year or two and the next one. Went back on the Indomethecine and it seemed to control it. Episodes were periodic and I would go for 6 months to a year. We moved to Hawaii (from Oregon) in 1999. The first summer I experienced my first "seasonal" attack but started having stomach problems with the Idomethecine. They put me on Naproxen. Seems that Hawaii's humidity keeps me pretty regular. Since then, I have been using the Naproxen (Alieve), Maxalt, Oxygen, and Torodol. When I get to an 8 on the Kip scale, we are at ER for a torodol shot. I am not pushing it any farther than that. This usually is very effective.
I'm kind of confused about a few things, though:
First, most of my attacks occur during the day, especially if it is very hot or humid. Stress is a good trigger, too. They start mildly enough but by the end of the day they build. They seem to be continual, sometimes with short bursts of relief (15 or 20 min.). I read that most everyone else have their attacks at night. I do wake up with them occassionally, with the same results that they build during the day, but this is not my norm.
Second, my last visit with my neurologist she had reviewed my medical file and noticed that I had a "not normal" sinus rhytem in my EKG's. I went through open heart surgey at age 16 and my EKG's have always been off (I still have a bicuspid valve that may or may not need repair in the future). My Cardiologists have always given me the indication that my EKG's are "normal, not-normal". My neurologist mentioned that sometimes bad sinus rhythums may have something to do with the headaches. They say hindsite is 20/20. Within months after surgery (age 16), I had had short burst, sharp pain headaches in the right temple and down the side of the face. They would last for 15 to 20 minutes and repeat 3 or 4 times then resolve for a while and start all over again, to dissappear entirely after I had my first daughter at age 23. Then my first "true" cluster at about age 29/30. Has anyone else heard of this? Has anyone done any studies that may correlate heart conditions with the headaches.
Third, reading the Kip scale and some of the stories, I'm confused by the reactions. The worse mine get, the more I go "inside myself", start to pant, and don't want to move. Even crying hurts. I'll kick my legs back and forth and sometimes grip with my hands, but any movement of my head or facial features: mouth, eyes, etc. seem to make it even worse. And I can smell things for miles, it seems. Is this normal "cluster" reaction also?
Fourth, I have an overbite, with mild TMJ. It has been suggested that the TMJ may also be a trigger as the jaw muscles tighten and effect the muscles up the side of the face. I have had a neurologist suggest I go in to have the jaw reset and fix the overbite. My dentist does not recommend it. She says that the surgery often fails or reverses and that at my age the surgery may will stretch muscles, ligaments, nerves, and tendons that may cause more TMJ pain in the long run. Any insight into this?
Fifth, I have an oversensitivity to a lot of medications. Many of them work the opposite on me, such as narcotics giving me pain. Are there any studies on brain function of a cluster headache sufferer? Are we "wired" wrong?
If it helps anyone else, little trick I learned from a nurse friend of mine is at the hint of an episode, if I drink something extreamely cold and give myself a "brain freeze", sometimes it will knock itself out.
I am fortunate to have a very understanding husband and daughters. They are very aware of when one starts to hit and do what they can to help - close the blinds, turn on the airconditioner, remain very quiet. (Forgot to mention, in the absence of, or in conjunction with the intense sense of smell, I will sometimes get very acute hearing, especially sharp sounds.)
And finally, thank you for welcoming me to the site and all your great insites. Although I do have a wonderful immediate family, it is hard to explain to my boss, co-workers, friends, parents, sisters, etc. why I just can't function at times. I really relate to the story I read a few years back about the sister who told her brother to "just go take a couple of asprin and get over it". Wish it were that simple. It helps to know that I am not just a hypercondriac (my family's favorite term as I was growing up) and that there are other "hypercondriacs" out there with me. 
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Bob_Johnson
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Re: curiouser & curiouser
« Reply #7 on: Mar 12th, 2008, 8:56pm » |
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This is the latest thinking about meds, all of which are available in the U.S. Given your heart history, Verap. is not appropriate, as you have discovered. Use this article to discuss options with your doc. Clearly, you need someone with good experience working with complex headache disorders.
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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| « Last Edit: Mar 12th, 2008, 8:57pm by Bob_Johnson » |
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luckylady
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Re: curiouser & curiouser
« Reply #8 on: Mar 12th, 2008, 9:15pm » |
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Bob~
Thank you for your response. I am printing the article as I type. Unfortunately, I have Kaiser. Not saying they are bad doctors, but I have yet to find anyone willing to really explore the problem. A lot of Doctors don't even know what a cluster headache is and will only treat the migraine. The rest just throw meds at me and tell me to follow up. I feel caught in a mill. I have 2 neurologists I follow up with. The woman (who sees me for the clusters) just throws pills, the man (who sees me for a displaced sacroilliac), is always in a rush.
I have been scouring the site all day and have learned a lot.
Mostly I have learned that I am fairly lucky. A lot of the stories out there make me feel like I am whinning about nothing, in comparison.
Thanks for the info on the verapamil, too. Wish I had contacted you guys before I had tried it. Why didn't the doc know that verapamil isn't a good idea for a heart patient?
Anything else anyone may have to contribute, I am a researcher. Been through enough medical garbage to last a life time and have learned to be informed. So far, this site seems to be the best informed and most helpful.
Just curious, do clusterheads ever outgrow the cluster "stage" in their lives, or is this a "till death do us part thing". (Which I almost took literally last night when my husband's African Grey wouldn't stop his high-pitched, smoke detector imitation in the middle of a number 5. - His, not mine. Poor bird is probably still confused why he didn't get an "up, up" instead of the "smack, smack" he got with the mail I was bringing into the room with me.)
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Jonny
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Re: curiouser & curiouser
« Reply #9 on: Mar 12th, 2008, 9:25pm » |
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Never trust an African Grey.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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jon019
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Re: curiouser & curiouser
« Reply #10 on: Mar 12th, 2008, 9:47pm » |
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Hi luckylady,
Ironic name fer sure. Welcome, sorry you have to be here!
There are all kinds of folks here with way more knowledge than me, who will surely be along. So, just a couple of comments from me that hopefully will spur your curiousity or help your understanding.
Verapamil "sorta" works for me. None of the side effects that you have experienced but not uncommon for different folks to react differently.
Many have had success with short term use of steroids. I'm thinking of two: Prednisone and medrol/solu-medrol.
Powerful "anti-inflammatories" that can sometimes break a cycle and allow preventives to take effect. In my case, a solu-medrol IV worked "magically" once to stop a cycle for months, nothing the second time. Also, common to take a taper: larger doses, followed by progressively reduced amounts over a several week period. Not something you'd want to be on continuously, as the side effects are progressive and potentially serious.
I take large doses of magnesium (1000 mg/dy) which "seem" to help though I really can't say for sure. Others have reported taurine supplements and/or vitamin B complex can help.
Energy drinks have been a life saver for me. The combination of caffeine/taurine plus other components, taken at the first hint of a hit have stopped many for me.
I favor "Wired" which has 344mg/16oz serving of caffeine and 1500 mg taurine. "Red Bull" is the most known of these, but expensive.
Heat, humidity, sunshine, rapid barometric pressure changes, altitude changes, all triggers for some. I first noticed this (for me) when I realized I always seemed to be wearing sunglasses when going to the oxygen store. Whatever your success or failure with oxygen, give it another try. Minimal side effects and wonderfully effective for MANY.
There is no "norm" with the beast. Day, night, morning, afternoon. I've experienced them all.
There is medical evidence of congenital heart defect (holes in chambers) being related to migraine. As for ch, not known yet.
How you react to the pain, also variable. "Typical" for ch is the inability to remain "still". Just because you may not exactly follow the pattern means nothing.
The 'smell" thing, now that intrigues me. Once posted this question and got several interesting replies. Apparently is not "common" but is not unknown. In my case, I get a strong, distinct, and unmistakeable odor of ammonia. Usually is a "tell" for me that this hit is gonna be bad. Doesn't happen with lesser hits. Mentioned it to my neuro, she said "never heard that one but I want you to tell me of ANY symptoms. You never know what may be helpful." Acute hearing? For me, yup, sometimes. Other times I turn the TV on to distract me.
Wired wrong? I'd have to say YES. Current theory is that a "defective, altered, unstable, you pick the word" hypothalamus is the "cause" or at least contributor.
Rapid cold drink? Oh yeah, many report same and especially if its an energy drink. Ice pack, or pack of frozen veggies on the head, or sucking on an ice cube, or cold shower (or hot for that matter)all reported as effective for some (cold makes it worse for me, hot better,but we is all different).
Having great supporters, now THERE'S lucky? God bless 'em, I don't have 'em and I'm jealous, but they are angels.
Print out the "Colleauges (sp?)and Friends" letter and show it around. Simon wrote it and will always have a special place in MY heart. Comes the closest to explaining the unexplainable that I have seen.
My least favorite phrase: "it's all in your head" Well, duh! If you could climb in it for a couple of minutes, you wouldn't ever say that again.
Regards,
read everything here,
Jon
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| « Last Edit: Mar 12th, 2008, 9:48pm by jon019 » |
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"The beginning of wisdom is to call things by their right names." (that's cluster headache doc)
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LeLimey
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Re: curiouser & curiouser
« Reply #11 on: Mar 13th, 2008, 7:11am » |
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Jon beat me to it on the heart and migraine info (Don't worry, I'll thrash him later )
Carrie (Lizzie2 on this site) was staying with me a while back and the two of us attended the migraine action conference where there was a talk on PFO - Patent Foramen Ovale. Carrie did an excellent article on it for the OUCH Newsletter which you can read here. There are some further links too which may be of interest.
As Jon has said, nothing is actually proven but given your heart condition already it might give you a jumping board for further ideas! I hope it helps anyhow. One of the indicators for it is sudden severe ha's which alone makes it something you should maybe read up about.
Overview of PFO
http://www.clevelandclinic.org/heartcenter/pub/guide/disease/congenital/ pfo.htm
PFO and Migraine
http://www.jr2.ox.ac.uk/bandolier/band142/b142-4.html
OUCH US Newsletter - PFO Article
http://www.ouch-us.org/newsletters/10-2006/10-2006.pdf
- I hope you find the newsletter useful reading anyhow! Join OUCH - together we have a stronger voice!
Helen
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luckylady
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Re: curiouser & curiouser
« Reply #12 on: Mar 13th, 2008, 9:47pm » |
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Jonny~
Thanks for the laugh. My husband thought it was funny, too, and that's his baby, literally. The bird is a special needs bird and thinks he's human. He actually lies on his belly with his blanket (baby receiving blanket) wrapped around him on top of my husband at night before he will go into his tent to sleep. He thinks I'm his mate and my husband, David, is his mommy.
Jon019~
You've given me a lot to chew on and now I don't feel so wierd afterall. I am definately going to follow up on the heart connection with my neurologist. Would make sense to me anyway because my congenital heart condition (possible hole in heart and lungs which healed themselves, repaired coarctation of the aorta, and bicuspid aortic valve) were likely caused by the pheonobarbital my mom was taking while pregnant with me. Wouldn't it stand to reason that if you had a birth defect in one area you might in another?
I in turn passed down my bad genes to my eldest daughter (currently 19 - yes, I am old), who had open heart surgery to repair "a whole bunch of holes" between the 2 upper chambers of her heart. She, has had 3 migraines in the last 4 years. I sent her the link to this site today so she can get the low down also. Tell me, does anyone know if migraines turn into clusters?
The restless moving, I understand. When it is bad, I can't seem to keep my legs still. I also pant. My husband nags me about this and says it is only making things worse. Is that so?
Oh, and energy drinks are death for me. Not only can't my head handle them, but my stomach revolts, I get the shakes (I shake anyway), and I get a very similar reaction to motion sickness.
LeLimey~
Thanks, for the links. I will have to download them tomorrow. Has been crazy at work today. Well, actually its usually like that, but today it's just me. Actually, it's usually just me anyway. Just a heavy work load, the boss/owner is out getting the results of his andiogram, my "assistant" (and I use the term loosely" is out taking care of personal business, and my V.P. is making medical appts. and follow ups to schedule his own heart surgery. Talk about stress! Anybody want to hire a very exceptional secretary that literally carries the load for the office?
I digress. (I'm good at that.) What is PFO? I will read the article tomorrow, but thought you could give it to me in a nutshell.
Oh, and I am JUMPING. Going to make an appt. with the neurologist to follow up on the "not-normal" ekg's and see what she has to offer.
Bob~
Read your article last night. Ok, right off the bat --- SCARY STUFF! Did I mention I do not tollerate meds well? I get a hang-over on nyquil.
The article kept talking about how much ch'rs can handle large quantities of these drugs and are usually given more than the PDR's recommended dosage. Most of them require periodic ekgs because the affect the heart. It did not mention torodol and that seems to work best for immediate (relatively speaking) relief. Last year I had a cough for 8 mos. They put me on larger and larger doses of Prednisone for 4 treatments trying to control it. At the time I thought God was being good to me by only allowing me to suffer one thing at a time because my season started late (I'm usually late July to August through October, early November), in mid October. (Coincidently, that's when we remodeled the kitchen and found the black mold under the counters - God bless humidity!) Cough went out, Ch came in. Now, according to the information you gave me, this may be a possible treatment. I'm going to check it out. Can't stand Prednisone, I'm always starved and I don't sleep. But my dislocated sacroilliac doc put me on Methylpredinsolone packs for the hip pain. Very effective and although has Prednisone component, does not have the same side effects. Actually none for the 2 times I tried it. Will take this to the doc, too. Anyone else used the stuff?
The surgeries sounded interesting, but I don't think I would qualify because I have had a few on the left side and .... (does anyone else do this?) I have actually had them creep across the brain, infiltrating their many tentrils stealthily through what I assume must be grey matter up there, but at this point usually feels like mush, until it wraps its ever tightening, thorny, iron-plated tendrils around my left eye, fry my left ear and cut off any possible opening to the sinus. Always goes Right to Left.
Beachmusic~
Thanks for the welcome. Maybe we will learn together. Is Dopomax similar to Maxalt? My husband fusses at me because I refuse to take the Maxalt as prescribed. I just can't get it down if I let it melt in my mouth. I have to wash it down as quickly as possible with something. Whoever said they taste like mint has not tasted them. UGGH! David says that they take so long to work because I wash them down instead of letting them melt.
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RichardN
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Re: curiouser & curiouser
« Reply #13 on: Mar 14th, 2008, 12:26am » |
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Hi and Welcome to Clusterville
I have to ask, since you didn't mention. What flo-rate and what type mask do you use with the 02. Many have their first prescription for 02 specify and 8 lpm regulator, much lower flo-rates than we require, and the wrong mask (or even less effective . . . the nasal canulae nose thingy) . . . . This won't do. You need a regulator that goes to at least 15 lpm and a non-rebreather mask (the one with the bag) . . . to be efffective . . . and should be used at the first sign of attack.
I can't take Imitrex . . . the most effective abortive in injectible form . . . due to some artery blockage and high cholesterol . . . could be VERY dangerous for me . . . so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack.
It was Verapamil that gave me my first pain-free day a few weeks after I came here (2/02) . . . and I did experience what we sometimes refer to as the Verapamil "buzz". Stopped it almost four years ago when my heart rate dropped uncomfortably low.
I use water therapy (see "water X 3" . . . link on left), and am convinced this has helped me reduce the frequency/intensity of attacks.
Keep reading, keep asking. The answers you will get here come from folks who truly know your pain.
Be Safe, PFDANs
Richard
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luckylady
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Re: curiouser & curiouser
« Reply #14 on: Mar 14th, 2008, 3:40am » |
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Richard N~
My oxygen guage shows a 2-15 lpn. When the Dr. first suggested it, he said to use it at 4-8. I find 10 to 12 more effective. I learned early on that the nose tubes do nothing. I specifically requested a mask. The mask has a bag on the bottom. My supplier is Apria, which is fairly inexpensive with a prescription. Get all the bottles I want for about $40/mo.
Can be very effective if I use it at the beginning, but once into it, the torodol knocks it out better than oxygen. Problem with torodol is i have to go into dr.office for shot. If it gets really bad, sometimes even the combo of Maxalt, torodol, & oxygen take a while to take effect.
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Emily
New Board Old Timer
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Posts: 279
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Re: curiouser & curiouser
« Reply #15 on: Mar 14th, 2008, 5:52am » |
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Hey Lucky,
Welcome to the site! It seems we have some similarities in our symptoms.
Most of the meds I've used have had a worse effect on me (indomethacine, pred and imi) and I also have allergies to medication (the worst one being anti-sickness medication ). My sense of smell is heightened all the time now and strong chemical scents trigger a hit in minutes - perfume, anti-freeze, bleach etc as are painkillers and alcohol.
I use melatonin (6 mg knocks me out cold!), o2 and energy drinks mostly. Ice packs are my night-time remedy instead of the red bull!
As you've already seen, there are plenty of people here who are able to give you help and advice. You've come to the right spot!
Em
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luckylady
New Board Newbie
I love YaBB 1G - SP1!
Posts: 7
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Re: curiouser & curiouser
« Reply #16 on: Mar 14th, 2008, 4:37pm » |
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Emily~
Thank you. Guess I'm not so wierd after all. Have tried over the counter Melatonine, so I'm not sure of the dosage. It knocked me out but then an hour later I was wired and coudn't sleep. They say meds/chemicals react the opposite in kids , for instance give them coffee and they quiet down. (My husband used to drink black coffee in the morning when he was a kid to "calm him down" because he was "hyperactive".) Guess maybe my body never knew it grew up and that's what I do. Perhaps a larger or smaller dosage might work. will discuss this with my neurologist.
Have used cold packs on the back of my head, which seems to have some affect on the migraine portion but does not touch the cluster.
Glad someone relates to the smells portion. This is my biggest problem. If someone comes in the office reeking of perfume or cologne, I immediately take a Maxalt because within 10 minutes I am at a No. 5 and if I don't get it right away, I'm at the Dr. for a Torodol. I have actually had to have my husband or daughter drive out to pick me up from work some a few times because it hit so hard and fast. Last time was about 4 months ago. Sales girl came in with, I sware must have been about a gallon of something on. Down came the wrecking ball and before I could even get to my Maxalt, I was shaking and wimpering in pain. My assistant was new and she was freaking out. I just managed to swallow a Maxalt, gasp out for her to call my husband to get me, and went upstairs to the back office, cranked the airconditioner, turned off the lights and lay on the sofa kicking my legs back and forth until David could get here. These are killer. I find myself walking around with my nose plugged all the time.
When I was a kid, I used to get nose bleeds all the time. (It was later found out it was due to extreamly high blood pressure from the waist up, due to my heart condition, and they resolved themselves.) It was suggested at the time I have the blood vessels carterized in my nose. With the clusters, I have wondered if this would deaden the sense of smell. Have you heard of any other preventatives for the smell triggers? If I could resolve that one, then I would be ever greatful. That is the one that just comes out of the blue and just slams me with no recourse.
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Trooper
New Board Junior
I ain't skeert!
Gender:
Posts: 93
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Re: curiouser & curiouser
« Reply #17 on: Mar 15th, 2008, 2:48am » |
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Hi Lucklady! Glad to meet you but sorry you have to be here. WOW that is some great info about the tea. I was sitting here drinking a glass as I read your post and almost choked on it. I just made a jug of it tonight because my cycle started a week ago so my usual friday night beer is off limits. Guess I will be sipping on water only for the next few months.
I am a female who suffers from clusters and mine also sometimes have typical migrain features. I know alot of people here talk about doing the dance but like you, I find that I need to be perfectly still. I lay on my cluster affected side, it works for me. The only time I move is when I get to the K-9 and 10 level and then I usually just hold my head and rock.
I hope you are able to come up with some better treatment options from the info provided on this board. There are lots of great people here willing to share.
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