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Your Daily Headache (not A Migraine)


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Hello again,

I know that many of us have migraines, myself included, but what about a chronic headache? I KNOW that for me, it is NOT a migraine, it feels different. I have read that one of the many symptoms of POTS, autonomic dysfunction and neuropathies have headache as a symptom.

What is yours like?

Does anything make it better?

Anyone find an cause (structural damage, tumor, low blood flow, etc..)?

Do we all have anything absolute in common to describe the headache?

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In another post, I described my experience with migraine and cluster headache. About three to four days a week, I have just another headache...not as severe, but an ache that starts at the back of my head that just gets in the way of anything I might do otherwise. I usually give in a take something to relieve it. If its going to happen, I wake up with it in the morning.

I think this particular headache is just the result of low blood pressure/not getting enough oxygen to my brain.

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Hi,

For your symptom breakdown some of it sounds like a sinus headache, which is more apt to occur in people with allergies or congestion that causes sinus pressure.

Also, the light (and for the most part sound too) sensitivity, and some of the other things you mentioned sound like a migraine, I know you said for you it isn't, but I think if you are light, sound, smell etc. sensitive, then it is a most likely a migraine.

I think the mechanisms and symptoms of why many of us get headaches are very broadly related, due to that we all have some dysregulation of the autonomic nervous system (and the ANS controls a lot of body functions that can result in headaches). But, the overall reaction of the ANS dysfunction is based on the person, their anatomy, comorbid conditions, age, hormones etc. So, in other words I guess it makes sense that we get headaches, but I don't think that there is one common thread.

One thing that may occur more often is that a migraine sets off the "flight or fight" response, so those who are hyperadrenergic etc. may have a common link of headaches to dysautonomia.

Treatment depends on the headache. For me the first line of defense is make sure I am hydrated, eat if I need to eat, make sure I took all my meds, and then start taking electrolytes. I have had the most luck with magnesuim for myself and headaches (mainly migraines). I try to not take meds for it or less it gets REALLY bad, or I really have something I need to do and without meds I will not be able to do it.

I don't think that for most of us there is a structual cause such as a tumor etc. The one thing would possibly be EDS in some people may be a structual "cause". Otherwise it is more of the body's response to different internal triggers, such as hormones, pressure (blood and barometric) etc.

I am not sure if that makes sense, my meds are messing with me.... :)

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I agree with ajw that we seem to be prone to headaches, but the sources seem to be quite different.

I have spent a great deal of time and effort over the last 15 years or so trying to get rid of my headaches. I have made good progress as they were daily, and are now less frequent and much less painful. It seems there were several things going on and I list these as an illustration of how many things can cause quite similar feeling headaches, rather than as a guess to the cause of yours.

Untreated whiplash from an accident - getting this treated years later reduced the severity of pain

Sinusitis

TMJ causing pain around ear and jaw and referring pain around eyes and cheek

Trying to treat the above with painkillers too often so the painkillers were giving me headaches!

Being deconditioned - then I get direct and referred pain from trapezoid muscle in neck, shoulder and jaw.

I'm still trying to improve the situation so no doubt there are other causes too!

In your survey you mention pain in the back of the head. I sometimes get pain at the crown which I believe is often caused by dehydration. I think you said you pain was much further down, towards the base of the skull. I think that is more unusual and I would maybe pursue this is a distinguishing feature of the headache.

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ajw,

Thanks for the input. I do have sinus issues and I know how a sinus infection feels (I've had plenty :) ) I also have migraines, where the fact of being alive is painful, it's a hypersensitivity that is hard to describe. However, the daily headache I've had for the past two years does not feel like either. The only reason the doctors are calling it a migraine is that it is one sided and light sensitive and activity makes it worse. It has such a specific placement and pattern of pain that it makes me wonder :o I don't really know who to go to, the headache specialist group was unkind and dismissive, and my neuro says it's part of the "neuropathy."

I guess the prospect of coming off of the medication that is controlling it is scaring me. (Tapering off all meds that effect the ANS for Vandy)

Jennifer

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  • 3 years later...

It's ironic that this post was started. My neurologist replied to my email plea for help a few days ago. I just finished replying to his last email before I signed in to the site. I live with chronic daily headaches/migraines. However, last week I tried florinef, got a massive migraine, (when I get a migraine it never goes away), and after 8 days of horrific pain, emailed my doctor (office closed for the week) and requested steroids and pain meds to avoid the ER.

Since I have been his patient for years and have only recently resorted to this pattern of steroids and Stadol the last few months, my doctor is understandably worried. My doctor recently had a patient whose stomach ruptured (luckily he had admitted her to the hospital) from too many NSAID's and steroids.

Thankfully, I had already started the process to see a pain management doctor in Houston who will give me nerve injections/block next week. I got the pain medicine and will make it to next week for the block without the steroids.

I have a question - Dr. Blitshteyn recommended I find an OB/Gyn who can perform a special test to see if I am in early menopause. If so, is the treatment any different for migraines?

At first effexor was a miracle drug for me and then topamax, but my headaches came back. Ultimately, the best success I have had treating my headaches is with a pain management doctor. Although he is too far for me to travel now, Dr. Gabor Racz at the Texas Tech International Pain Center helped me tremendously. He performed a scalene block and froze my sub occipital nerve. I no longer have the pain at my temple and ear (scalene block) nor have the intense pain going through top of my head (occipital nerve procedure). The only part remaining is the orbit above my eye. I was supposed to go back for a procedure in September, but my POTS flared.

I was amazed when I visited the Tech Pain Clinic. My friend whose daughter has POTS recommended me to Dr. Racz. The Fellow who assisted during my procedure completed his internship and residency at Cleveland Clinic.

I was also pleasantly surprised by the clinic's pricing. Due to insurance issues (one procedure a day) we

paid cash for one procedure. The block was probably one third of the cost of the same procedure in

Houston.

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My daughter is having bad headaches again after not having hardly any for 2 years! It's so frustrating since the doctors won't give her a med like Imitrex, which is what I take to get rid of my migraines.

@Ajw, how much magnesium do you take? I've just started giving her magnesium but not sure how much?

Doctor now has her on an anti-depressant for prevention of headaches but after almost 2 weeks, I don't think it's helping at all.

Why will doctors not give pain meds or abortive meds but give heavy-duty meds like anti-depressants?

Brenda

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Trach,

My symptoms are very similar to yours, but my headache has been going on for about 6 months now. It's gotten progressively worse, to a point that I was in the ER before Thanksgiving and again last week. They gave me Ativan and Dilaudid. At home, the Dilaudid just didn't give me nearly the relief it did when given intravenously. My neuro dysautonomia specialist at Mayo is sending me to a headache specialist to see if those occipital nerve blocks will help me. I'm going on Wednesday. If I get the block, what should I expect the rest of that day?

Thanks so much! Hope all the headache sufferers out there get more relief in 2012. ; )

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Potsgirl,

I am so sorry your headache has been going on for so long. I know how unbearable the pain can be. After the last block i had, I felt fine after a few hours. The block doesn't always work immediately - the full effect can take several days. Ultimately the pain went away. When the pain came back I saw the pain doc again and he froze the occipital nerve. The procedure was strange but painless. Recovery was not a problem at all.

My daughter usually takes clonazapam before her blocks. Her doctor deadens the area with a lidocaine gel for about 30 minutes before the injection. After the injections (4 in her forehead area) we drove home (2 hours) and my daughter went to school the next day. Although my daughter has the occipital stimulator, her battery is dead. :( We are waiting until summer to replace it.

I have learned to ask in advance if the pain doctor/neurologist performs blocks on the forehead area. For some reason, many doctors avoid the area and my first doctor appointment was a waste.

I wish you good luck!

Brenda - is your daughter's doctor a cardiologist or a neurologist? Are you in an area where you can see a pediatric headache specialist? I learned more from my daughter's headache specialist in the last four years than from the last 30 years of seeing my neurologists. The only reason my daughter is thriving today is because of her pediatric neurologist.

There just has to be another way to treat your daughter's headaches. What do the doctors say if you request migraine medicine?

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She's seeing a neurologist. I haven't asked about migraine meds since others told me they won't give them to someone under the age of 18. She had headaches in the past she took xanax and that seemed to get rid of them. I have to email him again so I'll be asking him @ migraine meds. He's a very good doctor with a lot of knowledge @ autonomic issues but I know that doesn't always mean he knows about headaches.

Not sure if we have a pediatric headache specialist in our area. We live 50 miles from Milwaukee,WI.

Brenda

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It's weird that you say "your daily headache" because I thought I was weird for having an awful headache every day. I wake up each morning with a headache, and I go to sleep at night with a headache.

I'm still waiting to talk to my drs about this, because its becoming quite bothersome.

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  • 1 month later...

You are not weird at all. Just do not give up in seeking treatment. There are a lot more ways to treat headache/migraine pain than dysautonomia - you just have to find the right doctor (usually a headache specialist or a board certified pain specialist).

One word of advice....good headache doctors only try one medicine at a time. That is the only way you can tell if the medicine works or not. I know that sounds like "common sense 101" but over 50% of the neurologists my family has seen over the years has tried to modify more than one medication at a time.

I live in a small town and my older daughter sees a pediatric neurologist in Dallas. A few years ago, my daughter had a horrible migraine and needed to be admitted to our local hospital for IV DHE. Our pediatrician wanted us to consider using the new neurologist in town. We met with the new neurologist and told him our daughter's doctor in Dallas was considering Topamax but her doctor was concerned about weight loss. The next thing we knew, this doctor said he was going to put my daughter on Topamax and was taking her off of Corecard, because he "doesn't like Corecard ". We never saw that doctor again. The next month we saw my daughter's doctor in Dallas. She started Topamax. When it was time to go off another drug, her doctor asked her which one seemed to work better for her. She chose to keep Coregard. Listening to what works and taking one drug at a time distinguishes the great doctors from the fair doctors.

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  • 5 months later...

I get a daily headache in the afternoon that starts at the top of my head on the left side and moves down into my eyeball and into my neck in the back, like a really tight hat is applied to my head on the left. Had an MRI but it was clear so I was told to deal with it as it's part of POTS. About the time the pain gets bad enough to take something it subsides and leaves behind random, shooting pains and very dry eyes. Weird.

When my bp shoots up from an adrenaline surge my head hurts so bad all I can do is hold it and cry, and it lasts for days.

The only thing that helps the daily ones is a heating pad on my head/eye. I know it's weird as heat bothers us, but this is the one case where it actually helps me. I keep an icepack on my chest or I get too hot and dizzy.

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Usually I get a headache because I'm more exhausted than normal and am trying to keep my eyes open. It's like if you flex any other muscle all day, it will probably hurt. I was told no naps, but naps are usually the only thing that helps when I get that kind of headache.

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  • 2 months later...

I get a bad headache almost everyday that starts in the morning, within 1-2 minutes of getting out of bed. I can wake up and lay in bed for 20+ minutes with no headache, but as soon as I stand up, the pounding starts and it takes most of the day to go away. It affects my a lot because I don't have patience for my little kids when my head hurts and I can't go do the things I want to do. I take 4 Advil and 2 cups of coffee and a mid day nap and if I'm lucky that finally makes it go away. I see a specialist for TMJ and he recently prescribed Elavil, 10mg, to take at bedtime. He said some people who wake with a headache aren't getting enough "delta" sleep, or deep sleep. I felt like the headahces are more likely related to the surge in HR i get when i get up in the morning, but i was willing to try anything and it does seem to be helping.

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Has anybody had the exprience of having nerve block injections, that work for the pain, but then bring the nausea and vertigo to the forefront? This happened to me and i couldnt believe it. One thing taken away, another multiplied by a thousand!

Can anyone give me any advice on this, because the occipital nerve block injection took away the pain, but made other symptoms worse, if i had an abliteration or have my "frozen nerves" could exactly the same thing happen with surgery as the injection.

My problem is i am terrible with drugs and they do more harm then good, so although surgery is more drastic i would be willing, but my nuerologist says no.

Can anyone tell me how long and at what point you have to be in for nueros to take more drastic measures if drugs make you seriously ill?

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busybee: during periods when I'm less affected, my headache goes away at night, and then it begins all over within a couple of minutes after I get out of bed, then it varies all day. The pain is mild, like a squeeze, in my forehead. The brain fog is always part of the headache. When symptoms are worse, the pain is there all the time. It doesn't feel like any ordinary headache.

diamondcut: yes, I've had nerve blocks in the trigeminal nerve and they tend to give relief for less than an hour, but I haven't had any nerve procedures done. Drinking lots of liquids help, but not for long.

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  • 3 months later...
  • 1 year later...

Headaches is something very strange for me - since I was a child, I always got headaches very easily (though not extreme ones). Since I got pots 3-4 years ago, I never had any of these typical headaches again. It must be connected to pots - but who knows how...?

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  • 4 weeks later...

Old topic, but as a newbie, and since I've had a daily headache for 2 1/2 years, I thought I'd read through the posts.

Having not had anything really successful other than hydrocodone, and that only marginally, my new neurologist referred me to another neurologist for consultation to see whether botox injections might be helpful. I had never had headaches in my life until I started with all the POTS symptoms. Also, because the headaches seemed to be generalized over so much of the head, I had assumed the botox wouldn't be appropriate.

Two days ago I had twenty little botox injections around my head. From a daily headache between 3-7 on the pain scale to a mild headache between 1-2, I'm nothing short of amazed. And she said it would take 2-4 weeks to experience the full effect.

Since my hopes have been dashed too many times, I'm trying to manage expectations.

But so far so good.

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  • 2 weeks later...

I used to get headaches every once in a while, about once a week or so, with migraines a little less frequently. Over the past year they have really been getting heavy, though, and just in the last few months I have a headache every day. They range in severity, but most of the time they're so bad I have a hard time functioning or thinking straight. I'm always dizzy with them, too and it feels like something is tight around my head or that my head weighs like 100 lbs.

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  • 4 weeks later...

I have been dealing with this since my 20's where I would get a headache almost every day and go home from work, throw up and go to bed. I would repeat this for months sometimes and always had trouble getting enough sleep even though I slept great. I just could not get out of bed! Almost lost jobs because of it and have been drug tested more times than I care to say.

When I got into my 30's it became headaches with neck problems. In my 40's it became more of a back problem and the headaches were fewer and started seeing a chiropractor.

One day I was kayaking with my brother and got cramps in my legs that was very normal for me and my brother told me to drink some of his Gatorade. I drank one and my cramps went away immediately.

I have been drinking 4 or 5 bottles of Gatorade every day since and it has helped enormously!

My father was talked into having heart bypass surgery that made him a vegetable when we took him to the doctor for fainting.

This was shortly after being diagnosed with high blood pressure where they told him to stop his salt intake.

After the surgery everyone in the hospital forgot why he was there originally and he passed out when I tried to take him out of that hospital.

This is where I found out about NMH, where I couldn't believe what I was reading when I looked it up.

The description sounded so much like me I couldn't believe it!

In my 50's I found out I have diverticulitis and had a bowel re-section.

This made me evaluate my food intake and I stopped any alcohol consumption, which was not hard because it always made me sick any way.

Now I am 60 and managing much better since finding pseudoephedrine and Gatorade.

I handle day to day stress better, but still must watch myself and do not get ,many headaches any more.

Now I am watching my son deal with it where he has taken a leave of absence from work for depression.

He told me how his doctor described what is happening to him and I said it sounds just like what happens to me!

I have pointed him to this site and hopefully he will read some of the things said here.

I believe most of my family members have varying effects from some Disautonomia that effects them, but most don't want to believe me.

Anyway, most of my family members have dealt with headaches and so does my son now.

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