I am so tired of these headaches! I have a constant headache, had it for over 20 years now, then the migraines for variety & then there's the other headache. My constant headache is a low hum of discomfort at the base of my skull, the other headache is a fucking icepick jammed right in there. The only thing that helps it is to have someone grab both sides of my head & make like you want to pull my head off, you must pull straight up, that stops the pain for 5-15 minutes. Or I take my index, middle & ring fingers of both hands & jam them in to the point of dislocation & that works until I stop, the second I stop the pain is back. Really the center of the pain is an area the size of a quarter, 50 cent piece, then radiates pain out from that. It's not all the time, maybe 2-3 times a week.
Anybody got any ideas? Pain meds don't do anything for this other than make me sleepy, migraine meds do nothing, my laying down MRI shows all is good & I doubt I can get an upright. My neuro & gp both referred me over to PT & I'll be getting a neck brace for when it's bad to see if that helps. I wonder about Chiari or CCI, but with a happy MRI I doubt I can get anyone to look further.
Showing posts with label headaches. Show all posts
Showing posts with label headaches. Show all posts
28 April 2009
02 December 2008
Got some things accomplished & Migraines & Headaches
Well 1st up I got a few things checked off my medical to do list. I did get in for the heart echo & thankfully things look good with that, just some MVP. My PT got tired of the hoops the insurance company was making us jump thru, so she told me they have a fund for people who don't have insurance or who have crappy insurance & need DMEs & that she would get me crutches from that fund. They've come in & I should be getting them this afternoon. Also had the casting done for my orthotics, should take 2 weeks for those to come in. We'll see how those go & if needed we'll adjust or make new ones. Hopefully they'll work fine. So the only things left are finger splints & knee braces. Plus I still have 1 of my migraine types totally uncontrolled to work on.
Which brings me to the second topic today, headaches. It seems I don't mention my other medical issues because EDS takes up so much of my mind. I was dx'ed with migraines without aura at 14 & was put on Midrin, didn't stop them, but did help me be able to fall asleep so I could ignore them & I thought that was a very good thing. When I was 18 it was decided that since I was having 4-10 of them a month I ought to be on a preventive, enter Inderal. That was an evil med, I had the most horrific dreams I have ever had & I had a nightmare disorder when I was young. So I stopped that ASAP & went back to my Midrin. When I was 19 or so my sister was put on this miracle drug, Imitrex. She gave me 2 of them to try & they would really reduce my migraines to next to nothing. Somewhere around 18 I discovered I did have an aura, it was a buzzing in my ears, it was my aura for about 2 or 3 years, but then while I would still get it, it no longer was an aura, but an irritating thing. When I was 24 or so I got my first visual aura, that was strange. I still get my aura migraines & Imitrex still kicks their butt. I get 1-4 a month of these since I figured out aspartame was a trigger, before that it was 4-8 a month cause I just about lived on Diet Coke. I miss Diet Coke a lot, haven't had it since early summer.
I also get aura only migraines, there is no headache just the aura & it will last for ages, then I get this odd pressure feeling in my head, but it doesn't hurt. No clue what that's all about, but I don't much care for it. Those a pretty rare, few a year.
I also get 2 other headaches, my everyday headache & my nasty assed common headache. The everyday one is a low level headache that I can, for the most part ignore. I've had it for a very long time. I know by the time I was 14 I lived on Advil, I was taking as many as I could afford. Some days I would take 20, others 100. I know it was there when I was 12, before that I don't think it was everyday, but I know I had nasty headaches all the way back to kindergarten & they were common, but I don't think they were everyday. It's at the back of my head near the base of the skull. Sometimes (read 2-8 times a month) they will switch, with no warning they get worse. It's as though someone is turning a dial up, they go from 2-4 on the pain scale to 7-9. My neuro says these are migraines also. I'm still not sure I believe her on that. I has a MRI & structurally things seem fine. I from time to time wonder about Chiari, but my brain butt (I can never remember the correct name for that bit that effects Chiari, sorry) is way high up on the laying down, so there is no way a Dr is going to order a sitting up one. I also wonder if it's not the tiny bones up at the top that are just under the skull dislocating. I have some ugly click & snap noises with all my neck & head movements. So right now I am just marking on the calendar each day I have a headache & each day I have a "migraine". I don't take anything for the daily headaches. I take Ultram for my EDS pain & I just take an extra one when I get the "migraines" & if it's there at bedtime still I take a Flexeril. Nothing makes either go away, the Ultram does nothing for the everday headaches & it only turns the "migraines" down a notch or two. The Flexeril does help both a small bit.
Anyhow there is my history of headaches.
Which brings me to the second topic today, headaches. It seems I don't mention my other medical issues because EDS takes up so much of my mind. I was dx'ed with migraines without aura at 14 & was put on Midrin, didn't stop them, but did help me be able to fall asleep so I could ignore them & I thought that was a very good thing. When I was 18 it was decided that since I was having 4-10 of them a month I ought to be on a preventive, enter Inderal. That was an evil med, I had the most horrific dreams I have ever had & I had a nightmare disorder when I was young. So I stopped that ASAP & went back to my Midrin. When I was 19 or so my sister was put on this miracle drug, Imitrex. She gave me 2 of them to try & they would really reduce my migraines to next to nothing. Somewhere around 18 I discovered I did have an aura, it was a buzzing in my ears, it was my aura for about 2 or 3 years, but then while I would still get it, it no longer was an aura, but an irritating thing. When I was 24 or so I got my first visual aura, that was strange. I still get my aura migraines & Imitrex still kicks their butt. I get 1-4 a month of these since I figured out aspartame was a trigger, before that it was 4-8 a month cause I just about lived on Diet Coke. I miss Diet Coke a lot, haven't had it since early summer.
I also get aura only migraines, there is no headache just the aura & it will last for ages, then I get this odd pressure feeling in my head, but it doesn't hurt. No clue what that's all about, but I don't much care for it. Those a pretty rare, few a year.
I also get 2 other headaches, my everyday headache & my nasty assed common headache. The everyday one is a low level headache that I can, for the most part ignore. I've had it for a very long time. I know by the time I was 14 I lived on Advil, I was taking as many as I could afford. Some days I would take 20, others 100. I know it was there when I was 12, before that I don't think it was everyday, but I know I had nasty headaches all the way back to kindergarten & they were common, but I don't think they were everyday. It's at the back of my head near the base of the skull. Sometimes (read 2-8 times a month) they will switch, with no warning they get worse. It's as though someone is turning a dial up, they go from 2-4 on the pain scale to 7-9. My neuro says these are migraines also. I'm still not sure I believe her on that. I has a MRI & structurally things seem fine. I from time to time wonder about Chiari, but my brain butt (I can never remember the correct name for that bit that effects Chiari, sorry) is way high up on the laying down, so there is no way a Dr is going to order a sitting up one. I also wonder if it's not the tiny bones up at the top that are just under the skull dislocating. I have some ugly click & snap noises with all my neck & head movements. So right now I am just marking on the calendar each day I have a headache & each day I have a "migraine". I don't take anything for the daily headaches. I take Ultram for my EDS pain & I just take an extra one when I get the "migraines" & if it's there at bedtime still I take a Flexeril. Nothing makes either go away, the Ultram does nothing for the everday headaches & it only turns the "migraines" down a notch or two. The Flexeril does help both a small bit.
Anyhow there is my history of headaches.
21 October 2008
A bit of this & a bit of that
I've had 2 nasty common migraines (no aura) in the past 5 days. Thankfully the 1st went away with a good nights sleep courtesy of some meds & muscle relaxers. The 2nd one hit at 3.30am so I couldn't take much for meds (otherwise I might not wake up when the alarm goes off & I won't take much during the day since I don't like to be too gorky), I just rode that one out. It was gone by bedtime.
My right hip has been a bother lately. It's like it's a 1/10 of a nanometer off from where it should be, but it pulls or presses on a nerve so it hurts a bitch. I can't seem to get it to be where it ought to be so I'm just stuck with it like this. Ah, the joys of EDS.
I had PT last week & I go again today. I think I broke the cardinal rule of PT. I changed the exercises they gave me. I was supposed to lay on my back with a my legs out flat & a towel under my knee, the using the top of my thigh press down. I've found if I lay on my tummy I don't hyperextend at all, even with the towel I would a bit. So I might get in trouble for not doing it right. I don't know how often I was supposed to do the exercises, I did most of them everyday. I skipped the headache days, cause to be honest I barely did a thing on those days.
I stopped by my old job & talked to one of the girls there about having her sister come over 1-2x per week for an hour to help me out. I am hoping she'll be up for it. I just need some help with getting laundry down to the basement to wash & getting it back up to the 2nd floor to put away. Plus the trouble of folding it all. I need some help with vacuuming & a few other things. No backbreaking stuff, no cleaning bathrooms, no icky cleaning. I was thinking 1/2 hr of that, then 1/2 an hr of playing with Toad. Just going outside & running around the yard or walking to the park. She needs to get outside more & I can't handle her outside well. She's 17 & adores little kids & thinks I'm pretty cool, so I thinking she would be up for helping me out.
My skin is even better & it's only been a little more than 2 weeks. I am starting to really think this might be the fix I needed. Some days I've skipped the morning cleaning, if I'm not going anywhere or anything I figure there is no reason to clean my face. I am thinking I'll put up a pic Friday since that will be 2 weeks.
Potty training is still doing awesome here. She will ask for a diaper if she has to poop. If we are just running a few errands & won't be out over an hr she doesn't wear a diaper. She's got wiping down great too.
Well I think that covers the highlights of what's going on here for the most part.
My right hip has been a bother lately. It's like it's a 1/10 of a nanometer off from where it should be, but it pulls or presses on a nerve so it hurts a bitch. I can't seem to get it to be where it ought to be so I'm just stuck with it like this. Ah, the joys of EDS.
I had PT last week & I go again today. I think I broke the cardinal rule of PT. I changed the exercises they gave me. I was supposed to lay on my back with a my legs out flat & a towel under my knee, the using the top of my thigh press down. I've found if I lay on my tummy I don't hyperextend at all, even with the towel I would a bit. So I might get in trouble for not doing it right. I don't know how often I was supposed to do the exercises, I did most of them everyday. I skipped the headache days, cause to be honest I barely did a thing on those days.
I stopped by my old job & talked to one of the girls there about having her sister come over 1-2x per week for an hour to help me out. I am hoping she'll be up for it. I just need some help with getting laundry down to the basement to wash & getting it back up to the 2nd floor to put away. Plus the trouble of folding it all. I need some help with vacuuming & a few other things. No backbreaking stuff, no cleaning bathrooms, no icky cleaning. I was thinking 1/2 hr of that, then 1/2 an hr of playing with Toad. Just going outside & running around the yard or walking to the park. She needs to get outside more & I can't handle her outside well. She's 17 & adores little kids & thinks I'm pretty cool, so I thinking she would be up for helping me out.
My skin is even better & it's only been a little more than 2 weeks. I am starting to really think this might be the fix I needed. Some days I've skipped the morning cleaning, if I'm not going anywhere or anything I figure there is no reason to clean my face. I am thinking I'll put up a pic Friday since that will be 2 weeks.
Potty training is still doing awesome here. She will ask for a diaper if she has to poop. If we are just running a few errands & won't be out over an hr she doesn't wear a diaper. She's got wiping down great too.
Well I think that covers the highlights of what's going on here for the most part.
17 October 2008
Headaches
I got one of my other migraines yesterday & it knocked me for a loop. I don't like to take much for pain meds during the day since I've got Toad here, so I just suffered thru it. At bedtime I decided to try just the muscle relaxer with ultram instead of with vicodin that I an supposed to take. (I take the ultram at bed evernight anyhow.) It worked well, I was able to sleep & normally I'd wake up with a milder migraine or just a regular, but icky, headache. This morning I woke up with a headache just a touch worse that my everyday one. Plus, unlike when I take the vicodin I don't feel oogy- slushy like I usually feel, I feel a bit tired (I did wake up a few times last night). So I think this is going to be what I do for these.
13 September 2008
Assistive Walking Devices Epiphany & More Thoughts on Headaches
I just realized that I will probably not be able to use a walker or forearm crutches & I think I know why I have trouble with canes. They are transfer weight from the lower body to the upper body, correct? Where would that weight be redistributed to? Yes to the arms & from the arms where does it go? The back, the shoulder, the pecs & to the side. On the right side I am missing all the muscles on the front & side of my ribcage, which means the weight all ends up on my back & neck which isn't really helpful. Plus, add in that my arms are about 3" different in length & you can see that these devices aren't really an option for me. I don't know where I assumed the weight was going to, but it just didn't dawn on me that you need chest & side muscles to use these & that having arms the same length might be useful for pushing a walker. So I have decided I am going to start saving for a chair for times when walking unassisted isn't an option. It'd be nice if insurance would cover it since I'm pretty sure that my doc would write for it once I point out I can't use anything else, but since I don't need it 100% of the time I know they won't.
Ok so I've been thinking more about the non-stop headache I get. OSM suggested it might be related to Chiari, but I don't think it is. I really don't feel that I have Chiari, but I do think I have a structural issue. I think the issue is more likely to be related to the small bones shifting under the weight of my skull. I remember reading on another blog about a doctor at The Chiari Institute checking for that by having her person sit & the doctor used their hand to "lift" the weight of the head & I tried that with my roommate & my headache was cut by more than 1/2 & we didn't know exactly what we were doing. I do agree that there probably are migraines, but they are a symptom not the problem. I know a regular headache can trigger a migraine & I think the structural issue causes the constant headache & that in turn causes the migraine.
Is it wrong that I wish I didn't have to be my own doctor, that I want someone else to figure all this out rather than me trying to do it?
Oh & just for fun my right knee is jacked. I don't know if it's partially out or if it was & is now back but a tendon/ligament is still pissed about it, but it's driving me insane. I've tried a few things to get it "right" again, but it done't seem to want to be a normal knee. It's been wonky for a few days now & it does hurt, but it's like low level pain or wicked bad discomfort so I've just been dealing with it, but I am tired of this & want my normal level of crap knee back.
Ok so I've been thinking more about the non-stop headache I get. OSM suggested it might be related to Chiari, but I don't think it is. I really don't feel that I have Chiari, but I do think I have a structural issue. I think the issue is more likely to be related to the small bones shifting under the weight of my skull. I remember reading on another blog about a doctor at The Chiari Institute checking for that by having her person sit & the doctor used their hand to "lift" the weight of the head & I tried that with my roommate & my headache was cut by more than 1/2 & we didn't know exactly what we were doing. I do agree that there probably are migraines, but they are a symptom not the problem. I know a regular headache can trigger a migraine & I think the structural issue causes the constant headache & that in turn causes the migraine.
Is it wrong that I wish I didn't have to be my own doctor, that I want someone else to figure all this out rather than me trying to do it?
Oh & just for fun my right knee is jacked. I don't know if it's partially out or if it was & is now back but a tendon/ligament is still pissed about it, but it's driving me insane. I've tried a few things to get it "right" again, but it done't seem to want to be a normal knee. It's been wonky for a few days now & it does hurt, but it's like low level pain or wicked bad discomfort so I've just been dealing with it, but I am tired of this & want my normal level of crap knee back.
11 September 2008
Important Request
If anyone knows what a normal damn body is supposed to feel like could they please let me know? Thanks.
So yesterday I went the neuro to talk about the other not migraine headaches I get. I get a lot of types of headaches. For migraines I get aura-then-migraine migraines plus I also get just-the-aura-then-a-slight-pressure migraines (those don't hurt). For my not migraines I get the daily never goes away at the base of my skull headache that always hurts just the levels vary. Sometimes (3-12x times a month) I get a worse headache at the back/base of my head. It lasts for 2-3 days each time (every now & again it will last for a 5 or so days). It comes often when the weather changes or if I've slept poorly or if the universe has just decided I look cute when I'm in agony. These headaches are ones I can sort of function with. I have lived with daily pain for my whole life so I am very good as pushing on when in pain. I usually wear tinted glasses, keep my fluids up & can run an errand or stuff like that, but I am very slow while I do it & have to lay on the floor a lot. Seems my neuro thinks these are migraines as well. Her thought is if it hurts like a bitch, makes your tummy feel like hell & like is a bit like a dagger thru your brain that you have a migraine. I thought if it didn't feel like my other migraines that it wasn't a migraine, guess that's not true. So now I have a dx of 3 types of migraine, lovely.
So just for the record let's look at what I've been dx'ed with this year alone that I thought were normal medical stuff I thought the whole world had to deal with but turns out a freaky things most of the world will never deal with, shall we? Good, here's the list:
2 new types of Migraine
EDS
PFPS-Really was EDS
Arthralgia-Due to EDS
Neuropathy
Not to mention the falls I've had to be treated for
Plus before this past year I have a few things wrong as well. Let's take a look at that list now.
Poland's Syndrome
Asthma
Migraine w/Aura
OA of both hands
OA of both knees
Kidney Stones
Scolosis
Chronic Severe Constipation
MVP w/Murmur
Irregular Heartbeat
So yeah if anyone knows what a normal body feels like please do let me know so I can figure out if I have 80 other things wrong that I thought were totally normal. Ugh.
Ok, so I feel a touch better now that I got all that bitching done, lol. Anyhow since I guess it turns out I am still getting migraines at least once a week my migraines aren't under control. My neuro wants to switch me from the Neurontin to Nortriptyline. So this week I was already trying to wean down to 600mg 3x per day on the Neurontin since I wanted to see if I could reduce the side effects, but not have the symptoms return. So now that it was 3 days already at the 600 3xs I have added in the Nortriptyline last night at 10mg. I will do 10mg at night for a week then I will take 20mg at night for a week, then 30mg at night from then on. I am to try to wean down the neurontin slowly & see if I can get off it without symptoms returning, if I can't that's ok. 300mg 3x per day would be ok & 600 3x per day would be acceptable. She also wrote me an rx for Vicodin & I got the drug lecture. I told her than if I take 1/2 a Vicodin with a low dose muscle relaxer I can sleep & usually wake with a much less painful headache if not returned to my normal low level pain. So if she could write for that she could give me less of the Vicodin. She did give me the muscle relaxer & the Vicodin as well. It's just a few of each, but when I can't sleep at night from the pain it's nice to know I have something I can do other than cry. When I get sent over to PT she wants them to do some work with my neck. I do wonder if there isn't a structural issue due to the ribcage issues & the missing muscles. I wonder if I am using shoulder muscles for things they “shouldn’t” be used for & there for pissing off my neck muscles. Oh & just for fun I have a history of mild mania & am on a tricyclic antidepressant (Nortriptyline), so life could get very interesting.
I’ll be posting about Toad’s school & how it went this week later today.
So yesterday I went the neuro to talk about the other not migraine headaches I get. I get a lot of types of headaches. For migraines I get aura-then-migraine migraines plus I also get just-the-aura-then-a-slight-pressure migraines (those don't hurt). For my not migraines I get the daily never goes away at the base of my skull headache that always hurts just the levels vary. Sometimes (3-12x times a month) I get a worse headache at the back/base of my head. It lasts for 2-3 days each time (every now & again it will last for a 5 or so days). It comes often when the weather changes or if I've slept poorly or if the universe has just decided I look cute when I'm in agony. These headaches are ones I can sort of function with. I have lived with daily pain for my whole life so I am very good as pushing on when in pain. I usually wear tinted glasses, keep my fluids up & can run an errand or stuff like that, but I am very slow while I do it & have to lay on the floor a lot. Seems my neuro thinks these are migraines as well. Her thought is if it hurts like a bitch, makes your tummy feel like hell & like is a bit like a dagger thru your brain that you have a migraine. I thought if it didn't feel like my other migraines that it wasn't a migraine, guess that's not true. So now I have a dx of 3 types of migraine, lovely.
So just for the record let's look at what I've been dx'ed with this year alone that I thought were normal medical stuff I thought the whole world had to deal with but turns out a freaky things most of the world will never deal with, shall we? Good, here's the list:
2 new types of Migraine
EDS
PFPS-Really was EDS
Arthralgia-Due to EDS
Neuropathy
Not to mention the falls I've had to be treated for
Plus before this past year I have a few things wrong as well. Let's take a look at that list now.
Poland's Syndrome
Asthma
Migraine w/Aura
OA of both hands
OA of both knees
Kidney Stones
Scolosis
Chronic Severe Constipation
MVP w/Murmur
Irregular Heartbeat
So yeah if anyone knows what a normal body feels like please do let me know so I can figure out if I have 80 other things wrong that I thought were totally normal. Ugh.
Ok, so I feel a touch better now that I got all that bitching done, lol. Anyhow since I guess it turns out I am still getting migraines at least once a week my migraines aren't under control. My neuro wants to switch me from the Neurontin to Nortriptyline. So this week I was already trying to wean down to 600mg 3x per day on the Neurontin since I wanted to see if I could reduce the side effects, but not have the symptoms return. So now that it was 3 days already at the 600 3xs I have added in the Nortriptyline last night at 10mg. I will do 10mg at night for a week then I will take 20mg at night for a week, then 30mg at night from then on. I am to try to wean down the neurontin slowly & see if I can get off it without symptoms returning, if I can't that's ok. 300mg 3x per day would be ok & 600 3x per day would be acceptable. She also wrote me an rx for Vicodin & I got the drug lecture. I told her than if I take 1/2 a Vicodin with a low dose muscle relaxer I can sleep & usually wake with a much less painful headache if not returned to my normal low level pain. So if she could write for that she could give me less of the Vicodin. She did give me the muscle relaxer & the Vicodin as well. It's just a few of each, but when I can't sleep at night from the pain it's nice to know I have something I can do other than cry. When I get sent over to PT she wants them to do some work with my neck. I do wonder if there isn't a structural issue due to the ribcage issues & the missing muscles. I wonder if I am using shoulder muscles for things they “shouldn’t” be used for & there for pissing off my neck muscles. Oh & just for fun I have a history of mild mania & am on a tricyclic antidepressant (Nortriptyline), so life could get very interesting.
I’ll be posting about Toad’s school & how it went this week later today.
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