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stephsurf

When Do You Become Symptomatic?

Symptom Variations  

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Hello,

My question really is as the title says. Obviously our symptoms become more pronounced when we are sitting and especially standing, and especially so for long periods of time. However, since my diagnosis I have actually always had some degree of symptoms when I am laying in the supine position and particularly so if it is generally a bad day. As a result I started to monitor my heart rate with the Mio Alpha to see if I could link these times correlate to a specific increase in my heart rate.

I found that often times when I can be feel pretty bad, my heart rate hasn't even increased by much, in other words it can be floating around 100bpm. Other times when I am completley calm and laying in bed and my pulse is between 60-80bpm I can feel at my worse and just have a gut feeling its going to be a bad today.

For example I had a great 4-5 hours last night after 9pm where I felt great, honestly as close to normal as I have felt in a whole long while. As a result I probably did spend a lot of time upright and probably 'over doing' - relative to a usual day when I spend much of it laying in bed and occasionally getting up to exercise my legs. Today when I awoke I just had the sense I felt good still. I proceeded to have a shower standing (I usually don't do this anymore as it usually makes me feel quite lightheaded), I also skipped eating and my usual drinking of a 1L glass of water before getting up because of this (although I am aware that could have set me off on the wrong foot). Anyway I was like this for about an hour and since then I have felt horrible all day, despite drinking, increasing salt etc etc - however I have spent much of the day again in bed and so my pulse has bee relatively stable at around 75 bpm for much of the day, yet I still feel like this.

Anyway I can tell when I get bad because I get quite bad brain fog, feel unusually sleepy, nauseated etc. I think one of my worst symptoms is a feeling of constant head pressure across my forehead which doesnt run around my head like a tension headache would (does anyone else get this? Its always there but gets specifically bad when I have a 'bad' episode - it gives me the feeling of almost wanting to lift my eyebrows to get rid of the 'weight' feeling), the coathanger headache and a congested feeling that runs into the top portion of nose and feeling of full ears which is made worse when I stand, I also feel rather irritable for no reason which can sometimes turn into a migraine (very much like a prodrome umbrella of symptoms, although this doesn't always occur). I can very well get these symptoms when I am lying down as well so I know its going to be bad when I stand.

I guess my questions are:

Do you find even spending too much time upright or expending energy talking etc. the day before can make you suffer the next day (as opposed to exercise)?

Do you become symptomatic at times when your heart rate would be considered normal or when you are laying supine?

Does doing 'bad' things in the morning such as showering upright, not drinking until after you get up etc really knock you for the entire day despite catching up on everything within a short amount of time?

Does anyone else have a constant head pressure/sinus headache type feeling (possibly associated with a congested feeling that isn't allergies)? I think the doctors I have seen and complained about this to seem to skip over it likes it not a major issue, however its probably the most annoying to me, if only I could get it to go away!

Thanks for any replies, they are greatly appreciated.

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Hi step, in answer to your first three questions yes, yes and yes.

In reponse to your last my head pain lasts. I've always got something going on with my head that ranges to tight band feeling, to sensations that my skull feels like it's making a cracking noise (possibly sinus) to 'head full of cement' feeling. I have chronic daily migraine, am medicated, but nearly every day I still get an hour or so of break thru pain which I am able to manage most of the time without extra painkiller but sometimes, the past 3 days has been an example, my breakthrough pain comes on and will not go away for 3 days no matter even if I take my pain pills to the limit of that which I am allowed. I get auras but I also notice prodromal signs that are not 'classic auras' -a slight change of visual perception that I can't quite put my finger on to explain, irritability and also anxiety. I will be having no pain when I get these symptoms but pain usually follows. The particularly long lasting migraines tend to make me angry. Not verbally or physically or anything, but my pain will often push me to remember painful actions of others in my past which I have to work at keeping out of my mind. I think it's response to the fear of knowing what the next few days of intense migraine is going to bring. Meditation during migraine has not been successful for me in order to minimize those angry feelings, although I am starting a new strategy of 'grounding' -resting the soles of my feel against a floor or pillow or something and feeling the sensation of the Floor. It helps to distract. During a migraine I will go from lying down to sitting up to pacing to baking (yep, baking a cake helps when my hands and face, especially my nose, are freezing at times with migraine as heat from the oven is soothing - my sister irons sometimes. At times my face can be hot and I can't bear anything warm near me.),and back to lying down etc. My changing responses can have to do with changing levels of pain and whether I am having problems standing, pacing, due to OI. I have all sorts of experiences with migraine now. About 4 months ago I developed tinnitus.

If you haven't consulted a neurologist who specializes in migraine, I have told that the general rule is that if a person has migraine or whenever the migraine pattern changes it is wise to take time to see a migraine specialist. My neurologist ordered a head Mri about 7 years ago to make sure that nothing else was going on. From the results he could see nothing to worry about but did tell me I had more pronounced areas of white matter in my brain than is the usual, but that it is a common finding amongst chronic migraineurs. I took it to mean that I had enough white matter evident that there was no reason for him to doubt my perception of how often I got migraines.

Blue

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Hi step, in answer to your first three questions yes, yes and yes.

In reponse to your last my head pain lasts. I've always got something going on with my head that ranges to tight band feeling, to sensations that my skull feels like it's making a cracking noise (possibly sinus) to 'head full of cement' feeling. I have chronic daily migraine, am medicated, but nearly every day I still get an hour or so of break thru pain which I am able to manage most of the time without extra painkiller but sometimes, the past 3 days has been an example, my breakthrough pain comes on and will not go away for 3 days no matter even if I take my pain pills to the limit of that which I am allowed. I get auras but I also notice prodromal signs that are not 'classic auras' -a slight change of visual perception that I can't quite put my finger on to explain, irritability and also anxiety. I will be having no pain when I get these symptoms but pain usually follows. The particularly long lasting migraines tend to make me angry. Not verbally or physically or anything, but my pain will often push me to remember painful actions of others in my past which I have to work at keeping out of my mind. I think it's response to the fear of knowing what the next few days of intense migraine is going to bring. Meditation during migraine has not been successful for me in order to minimize those angry feelings, although I am starting a new strategy of 'grounding' -resting the soles of my feel against a floor or pillow or something and feeling the sensation of the Floor. It helps to distract. During a migraine I will go from lying down to sitting up to pacing to baking (yep, baking a cake helps when my hands and face, especially my nose, are freezing at times with migraine as heat from the oven is soothing - my sister irons sometimes. At times my face can be hot and I can't bear anything warm near me.),and back to lying down etc. My changing responses can have to do with changing levels of pain and whether I am having problems standing, pacing, due to OI. I have all sorts of experiences with migraine now. About 4 months ago I developed tinnitus.

If you haven't consulted a neurologist who specializes in migraine, I have told that the general rule is that if a person has migraine or whenever the migraine pattern changes it is wise to take time to see a migraine specialist. My neurologist ordered a head Mri about 7 years ago to make sure that nothing else was going on. From the results he could see nothing to worry about but did tell me I had more pronounced areas of white matter in my brain than is the usual, but that it is a common finding amongst chronic migraineurs. I took it to mean that I had enough white matter evident that there was no reason for him to doubt my perception of how often I got migraines.

Blue

Hello, thank you so much for your reply it is much appreciated. It does make me feel better than someone else is also having symptoms in a laying down position and also when their heart rate isn’t supposedly doing much at the time.

I have a daily headache now, whether it is a chronic daily headache I don’t know, but it sure does feel like that. It has been this way since about February to March time. It presents as a constant pressure type feeling usually just at the front of my head, but can sometimes go into my temples. The fact you described yours as a heavy cement like feeling sums it up brilliantly (in fact I may have to use that to describe it in the future!) I do have TMJ and sometimes I can feel this doesn’t help the situation but this usually just causes what I would call normal headaches which are relieved by paracetamol/Tylenol. However every so often I get a flare from my pressure type headaches into what I would class as a migraine. When this happens I do get a very weird change in visual perception (I don’t know obviously whether this is similar to yours) but it is almost like I can’t quite put my finger on it either. The best I can describe it as is like a disconnected feeling. I also feel extremely nauseous, very tired, the congestion in my nose which seems to build up just beforehand tends to turn into a runny nose and sometimes I get a watery eye, and very dry mouth (oddly just on my left hand side). Like you mentioned I get very irritable. I can go from calm and happy one minute and when this kicks in I just feel majorly angry and for absolutely no reason!

What is interesting I guess is that I used to get classic migraines with a very distinct visual aura prodrome which used to last for about 30 minutes. I had these, usually every month, for around 7 hours up until last Summer (before my presumed viral infection which kicked off POTS). Often the headache wasn’t very bad at all preceding these, so I would just used to take co-codamol (paracetamol and codeine) and lie in a dark room for about an hour or so and that would help me a little to where it would be bearable until I slept it off. However these migraines I am getting now are obviously a lot different and for the most part don’t come with the distinct zig zags across my vision, blurry vision and loss of peripheral vision. Co-codamol also doesn’t help them at all, and obviously nothing up until this point has got rid of the pressure/cement feeling (which probably contributes to my brain fog feeling) since the beginning of this year when they started.

I had an MRI done a couple of weeks ago whilst I was in hospital – which was done at the time due to a suspected chronic sinus issue (although I didn’t think that sounded hopeful as my symptoms just didn’t add up). Obviously this came back normal – although I have my doubts despite asking the messenger doctor whether my whole scan was looked at in depth or whether focus was just on the sinus’s, although I would hope that, that wasn’t the case. As a result I am getting copies on a CD so that the neurologist I am seeing next week can maybe have a second look at them, just in case.

Out of interest can I ask what medication you are taking currently to be able to get rid of the constant pain? Has this also managed to get rid of the cement type feeling? I’ve heard triptans being passed about a bit but no one wanted to prescribe them for me due to my POTS issue and heart that’s playing up!

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Hi step,

i used to get classic 'textbook ' migraines in the past too. Not predictable in when they would come, but predictable when it came to aura -zig zag and 'bits' missing from my vision. And duration of time etc., i look back on those days fondly. It was like that for years but as pots symptoms became more noticeable ( long before diagnosis) the features of my migraine changed.

I went the whole route of all preventative and abortive meds for migrsine under the care of two different top australian migraine neurologists without much success. One med, an old generation antihistamine called cyproheptadine combined with a tricyclic antidepressant (can't remember the name)was effective prevention for me for quite a while, but eventually stopped Working. Naramig, a trip tan, worked well as an abortive but caused my erythromelalgia to flare. Then we found that ergotamine combined with dihenhydramine was an effective abortive for me but my pots doctor, who also is a vascular consultant ,pulled me off it when I was hospitalized with pots as it can be a nasty med if taken long term, apparently. Damages other parts of the body.

Eventually, during that hospitalization I was put on opiates taken at regular times during the day,everyday, that keeps most of the pain, but not all, under control. I have been careful not to increase my dosage due to the addiction factor and my daily dose is in the very low range but opiates also have adverse side effects. This pain relief was agreed on by my neurologist, pots doc and a pain management specialist.

Not perfect but certainly better than almost constant pain. I did read that a new migraine med should be available in a year and I will be interested to find out what it is.

Hope this helps. Not suggesting that anyone take long term opiates btw. It was a decision I agonized over despite having three specialists telling me it was better to take the opiates than the non addictive ergotamine which they would not even consider prescribing for me. That was a bummer because the ergotamine also seemed to help with my erythromelalgia.

Blue

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To add in another. I have had very severe episodes after driving. i will feel ok (for me )....get out of the car and have leg weakness, tremors etc... I drink fliuds when I drive and never drive for longer than around 20 minutes. Can't figure that one out.

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Another category for your poll could be "prior to/during/after menstruation". My symptoms definitely are impacted by hormonal cycles and I think this is the case for others too. When I have had heavy periods, my symptoms are at their worst right after (I used to have problems with anemia).

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Another category for your poll could be "prior to/during/after menstruation". My symptoms definitely are impacted by hormonal cycles and I think this is the case for others too. When I have had heavy periods, my symptoms are at their worst right after (I used to have problems with anemia).

Thanks so much for mentioning this! This is true before, especially the first two days are definitely the worse and leading up to.

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Wow, I thought everyone's symptoms were worse in the morning. Their was even a paper on this diurnal variation. For me I feel best after exercise but I know a lot of people say they have trouble exercising.

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Potluck, I lost my vision in the middle of my wedding, after standing so long. I didn't understand it at the time, but that was obviously an extreme stressor. I'd started sweating and getting weak (my pre-dh had put his arm around me when he'd noticed I'd started swaying). I'd been adamant that I didn't need to sit down (disrupt my wedding?!). But then everything went black! At that point I grabbed out for hands and started to shuffle backwards. My dad caught me from behind (so, see, there is logic for having father of the bride sitting behind the bride!) and my pre-dh had me at the side, to safely get me into a chair. Er, memorable wedding...sheesh. Now I recognize the signs!!!

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"I had an MRI done a couple of weeks ago whilst I was in hospital – which was done at the time due to a suspected chronic sinus issue (although I didn’t think that sounded hopeful as my symptoms just didn’t add up). Obviously this came back normal – although I have my doubts despite asking the messenger doctor whether my whole scan was looked at in depth or whether focus was just on the sinus’s, although I would hope that, that wasn’t the case. As a result I am getting copies on a CD so that the neurologist I am seeing next week can maybe have a second look at them, just in case."

This sounds so much like what i went through that I thought I'd comment. I'm brand new to this board- in fact this is my first post. I had classic migraines for years (decades). Then about fifteen years ago started getting these headaches- like yours, always on one side, VERY intense pain (like a knife being shoved through my face), nose stuffed on one side, tearing eyes, etc. It often will start with a mild headache, then over a course of hours develop into the knife-like pain on my cheek, along my nose, or my temple.

Like you, I thought it was a sinus issue and went to three different ENTs before I gave up (they saw nothing). I just sweated them out for years. When I couldn't stand it and if our clinic was open, I would go in for either toradol, demeral, or morphine shots. The pain lasts about 32 hours for me start to finish. I tried every migraine drug on the market- none of them touched it. I am allergic to oral NSAIDs, and also allergic to codene/codone type drugs. So all I could do is suffer and wrap my head in ice (which helps some) and wait it out.

I finally went to another ENT convinced it was a sinus problem. She finally did a CT scan and SURPRISE! My sinuses are perfect. So she sent me to a neurologist. I ended up at the headache clinic at a major university. By process of elimination (not cluster headache, not typical migraine, etc.) it was diagnosed as Trigeminal Autonomic Cephalgia (headache of the trigeminal nerve with autonomic symptoms). The best treatment is something called indomethecin, which I can't take because it's an oral NSAID. So the next best thing they could recommend is to learn to give myself toradol injections, which I do. I have to be sure that I get it early, before the pain gets over a level 6. The shots don't make it go away immediately, it generally takes about 45 minutes for it to start working, but it will prevent them from going into the full-blown 15 on a scale of 1 to 10. If you want to read about it, it is called the LASH headache (Long Lasting Autonomic Symptoms with Hemicrania). If you google it you can find out about it.

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Hi. I'm new. :)

I really feel symptomatic if I stay upright for long periods of time, obviously. My problem isn't short term as much as long-term, though. I'm so much more functional than I had been, but if I have to go out where I have to spend a lot of time on my feet, I become incapable of doing anything but lying down for the rest of the day. I once said I need a few hours recovery time for every hour I have to be up. If I can sit, it's a bit better, and I drink electrolyte drinks all day, it's helps a bit. I can't blame it on deconditioning any more.

By far, the thing that causes me the most problems, is when I do things where I have to get up and down repeatedly, like weeding or picking up the playroom. That is guarateed to make me feel awful for the rest of the day, not just the immediate seeing stars sensation. It's different if I can move consistently like walking without stopping until I'm done, that usually doesn't cause many problems for me now as long as I don't overdo it. It's stopping and starting and going up and down that's bad for me. My body can't adjust to the changes.

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I find similar issues with getting up and down too much, getting in and out of the car, etc.. It is amazing how I can feel pretty decent but one errand too many (in/out of car) and I'm toast.

My cardiologist explained to me early on that even if I don't feel presyncopal, but I've had tachycardia, I would be fatigued because my heart has basically been doing aerobics all day. She said "imagine how you'd feel after a 3 hour aerobics class. That's how your heart feels." I thought that was actually a profound way to look at it.

I also feel good when I walk but if I stop for more than a few seconds and remain standing, I can literally feel the blood draining into mower extremities. The muscles in your legs help pump the blood back up I to your torso when you walk through the muscle contractions. When you stop, the muscles are no longer helping the vascular ureter pump the blood.

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Love to hear everyone's perspectives. In ways, yes , it ***** to be us

but I love that we re not alone.

I too am most symptomatic in the morning, after a decent meal,

after standing or walking very little and yes.. Before the period.

Recently pinpointed top 3 triggers are rainstorms( or a cool front that

involves barometric pressure drops), dehydration and the week before

my period. My cardiologist is fighting to help me get through these

without crashing which for me means a day or 2 in bed with severe

fatigue, low BP that Midodrine can sometimes help and the inevitable

Crawling to bathroom or eat and passing out in between.

Also yes I have noticed that my hr is always lower when I am feeling

worse. On good days heart rate range is 90's to 120's . On poor days

its in the low 70's and maybe hits 100 if I move too quickly. I find that

strange too.

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I find that my symptoms show early in the morning, 1-9 AM. I wake up usually every morning at 2, sweaty, dying of thirst, and just plain ugh. Lying down for long periods is crap.

What irritates me, is that I could just be sitting in class when symptoms strike. I'm not doing anything strenuous, just sitting. Symptoms make fun activities like choir a pain.

Not to mention, the nausea... I was diagnosed with anxiety when I was really young, and I never know if I'm anxious, or if it's stupid Dysautonomia!

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It looks like being upright in the morning after lying down; when standing and when exercising brings on the worst of the symptoms. No surprises really.

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