Where's Heather?

Anybody know?

I’m here. Not doing well.
Just figured out a big piece of a long puzzle.
I have POTS and an abnormal heart rhythm on my BP machine, that needs to be checked out.
Picture this:
You get up out of bed and within 5 minutes you feel 200 degrees, your eyes have so much pressure in them and as your heart rate increases over 100 so
does the pressure in your eyes! I nearly keeled over and can’t stay upright at times for very long. I’ve been through crawling upstairs panting like a dog and vertical vertigo really bad when the tachycardia gets going.
Stupid me didn’t figure it out until I was checking my BP and HR standing up rather than sitting. Frequently I feel like I am going to explode from the inside out.
I’m really losing my legs, and can barely walk. I’m lucky I’ve had Xanax to bring down the heart rate, some.
Frankly I’m starting to wonder if coming off Klonopin got this all going in high gear, but I was sick of taking it at night because I felt like a zombie in the morning.

All I know is I’m a mess! :roll:
I’ve been researching dysautonomia. It’s a problem with the autonomic nervous system.
Also, my reactive hypoglycemia has gone insane at the same time. Some days I grabbed the wall and hit the floor.
This has been a HORRIBLE month. Just HORRIBLE.
Thanks for thinking of me Joy.
I guess when some people aren’t around, they are better.
When I’m not around, I’m worse!


Hi Heather,

I remember last time reading your posts, we are similar. I get the reactive hypoglycemia bad as well, and when I am laying still in bed on my back I am OK, then I get up and feels like my body is made of jelly first thing in the morning. My BP drops from when I am laying to when I am standing and heart rate goes up. If I move about doing tasks I start to sweat and heart rate goes up to 111 or more. This is supposed to be the ME bit they diagnosed me with, who knows. They say, more salt and water, but I didnt find that helped. A lot of people go on about adrenal fatigue, but had cortisol saliva levels checked over the last 4 years, they started bad, but last two seem OK, even got the hospital to do two ACTH tests, first one not brilliant, next one fine. I have a friend who is like this, takes low dose cortisol and has improved a lot, all different I suppose.
Best Wishes


What is ME?
If you take your heart rate lying down, sitting up, and then standing up, and there is a 30 point diference pretty quickly, you more than likely have POTS.
On the days my estrogen is extemely low, the symptoms are 10 times worse.
I’ve tried different types of estrogen but they are not agreeing with me.
I even tried a BCP but it was too strong and wired me out and made me dizzy.
I know the key to me having any kind of life is hormones and I have to find something my body will accept.
Each month I get worse since my body is not producing enough estrogen. No wonder women used to die before age 50. sheesh.


Well well well … glad to hear from you but sorry it’s been so bad lately. Your version of horrible sounds infinitely worse than my version of horrible, so you’ve made me feel better. Thank you! :mrgreen: For your sake, I wish next month that I will be the more horrible one so that you can have a break.

Hugs to you Joy! :smiley:


ME is also know as Chronic fatigue syndrome.

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system’s regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.

here’s some info on pots.


Thanks Jen! :wink:
I don’t know what’s next to hit me but I tell ya I sure am sick of being sick.


After this year, I do believe anything possible with mav.
My heart goes out to everyone here,
I hope you get some answers quickly heather.

I’ve had some problems with my heart of late as well, it’s caused some tachy , palpitations and when I eat I feel quite faint, my tachy starts up and BANG! I have a migraine.

They’ve scheduled a procedure for me to have my SVT fixed.
I’m having an echocardiogram this month, and wonder if they’ll find anything else that might be contributing to my migraine.

When I eat, the blood taken to the stomach to help in the digestion leaves my head with less blood, I feel drunk and light headed, my head starts to nod furiously and then Bang! The migraine starts, I can’t speak, or walk, my whole body visually shakes, and I get a tremor that runs through my brain,and travles down my back bone, I can’t stand, and my feet will go from under me, and my feet and arms flintch, I cant close my eyes while it’s happeing or I can feel my head spin.

I been trying to eat smaller meals and lay down, right after eating, to get the blood back into my head.
Laying down, seems to lesson the attacks.
I don’t know what to think anymore.
Could this migraine of mine be cardiovascular after all?
Time will tell.

Maybe your on to something here Heather, I suppose we’ll just have to wait and see hey?

I’m so sorry your feeling so sick! :frowning:

heather if you think it could be POTS, go buy some sports drink, maybe gatorade or something, it’s full of electrolites salt ect…
it might help?
I’ve started drinking it myself lately. :smiley:

Thinking of you jen from oz.

Postural Orthostatic Tachycardia Symptoms

healthy-holistic-living.com/ … ptoms.html
(scroll down the page)

Jen, migraine is a symptom of POTS.
POTS is actually a neurological problem since the autonomic nervous system is what regulates BP and Heart Rate.
It also regulates the endocrine system which is why reactive hypoglycemia is a real pain for people with POTS (like me)
I don’t recall you mentioning those symptoms before but I can certainly identify.
My problems started as long as a year ago and exactly 1 hour after eating I would practically collapse on the floor and want to go to the hospital.
It didn’t matter what I ate, it was any food at all. All hell would break loose, I couldnt walk, felt like I was dying, panting like a dog, (no kidding) and then after an hour and a half
to two hours I could walk again, and I would say WHAT THE HELL IS GOING ON??? So, I got so fed up with it, I called my family to come get me
because I refused to die alone. If I blacked out or died, no one would know. So the warning signs started quite some time ago. I never even heard of POTS back then,
and I wondered if I had post-prandial hypotension. But yeah, not getting blood to the brain, in retrospect, was what was going on (and no doubt still is, only worse!)
Now I have to find a doctor specialized in POTS. :roll:

Personally, I think migraine is a symptom of a larger problem with you, just like me.
I keep grabbing the base of my skull and sobbing when the tachy really gets going, and I think something migrainous is going on.
The pressure within my skull and behind my eyes is shocking.


My Dr has mentioned Sca (sporadic ataxia)
My symptoms have always been the same, but became worse (more obvious) during topamax trial.
They were so bad, just like having a stroke, I would just fall to the floor as well, and the weakness in my legs after an migraine has always been there, but never to the point it is now, after an attack.

I’m normally out of it most days, with my so-called migraine.
Drunken feeling (kind of like a mental orgasm) can’t think, confusion sets in, and my memory is shot!
We talk of mav being invisible illness; well mine STOPPED being invisible 2 months ago.

I’ve noticed long ago, when I was trying to identify with people on this forum, about my symptoms, I didn’t have many replies.
This made me realize, my migraine was very different to others here.
Very frustrating!!! :frowning:

Oh… and yes during this time, I was terrified to be alone, as I believed I’d die, so I had a family member come and baby sit me, my poor husband, was frightened to go to work, for fear he’d find me dead when he came home, ,many trips to the ER, and the Dr’s not knowing what to say, except migraine , can do anything to the body, go home , we cant help you.

I couldn’t walk to the toilet, for hours after an attack.
My attacks would come in waves, start off as my normal feelings of migraine, aphasia ect…
Then a few minutes after the first migraine, tachy and palpitations ect…,
Through my back and whole body, my head was pounding like I’d run a mile, there still was no pain, just pounding pulsating inside my head, With the rhythm of my pulse
The attacks would come all day, over and over again.

It was after lying on the floor, when no one was home one day, where I collapsed, that’s when I realized, lying down helped the blood get back to my head, which lessened the symptoms of the attack.

Then around 3 hours after, my legs came back.
I was having up to 4 attacks a day.
My daughter said she could see the blood drain from my face and my legs would go red.
My head bobbing furiously, mum said when it happened, my face turned Grey.
I had complete aphasia during this time.

I’ve had palpitations for years, I’ve told my Drs about them, and they just shrugged their shoulders at me.
I never realized until all these symptoms became worse, that eating a meal was having an effect on the migraine, remember my migraine makes me not able to think, confusion sets in, and also reduces my memory, so its hard to recall everything, when your in a permanent haze every day.

And yes Heather, I can honestly say, I know where you’re coming from, and have very similar attacks.

So Thanks for explaining your symptoms so vividly
Sorry for the babble, but I’ve felt so alone in this lately.

Jen from oz.

Jen, you’re still missing what I’m saying.
I do not believe migraine is your primary illness. I think it’s secondary.

I am getting worse every day and I know darn well it’s not primary MAV.
Mine is Neuro-cardiological. Dysautonomia (of which POTS is one) to be specfic.
The body cannot self regulate blood pressure, heart rate.
Heart rate jumping 20 or 30 points by standing up (and continuing to climb the longer you stay up) is not MAV.
The reason you don’t think your MAV is like others is because it’s not.
Didn’t you ever see a neurologist and talk about POTS or other autonomic nervous system problems?
Heck I’m getting so bad sometimes I can hardly stay standing 5 minutes. My legs shake, body tremors, right arm tremor.
Heart rate should be in the 70’s and it’s in the 90s or well over 100 just climbing stairs (which I can barely do).
That is not MAV at all. Feeling like you are walking around drunk sounds like POTS not MAV. Not enough blood flow to the brain.


Hi Heather well … I’ve just looked at this site you sent me and yes I get it,
none of my Dr’s have asked me about any of this, infact when I talked to my cardiologist about the recent symptoms, he said… oh your migriane is a different thing to what’s happening here… that’s because he is just dealing with superventricular tachycardia of the Av node, that’s his job, but as you say , I dont think they are seeing the whole picture.
Grrrrrrrrrrrrr :twisted:
My family have said , they dont believe its mav either, after seeing what happend , they believe it from my heart as well.

so yes , I get it, but I just have to get a Dr to listen properly and put all the symptoms together.
did you use a home BP monitor?
I said to jules , I’d wanted to buy one for ages.

thanks Heather.

hugs jen

I said to myself, I know Jen said XYZ but something’s not right. Meaning, I knew we had stuff in common but I kept saying out loud :
I don’t think she and I really have MAV!

I may have already asked this but are you perimenopausal?
It was the day before my period that I knew 100% I had POTS. It was unmistakable.
The worst night of all was when I yelled at my brother for calling me “lazy”. The cruel bastard.
Oh my God have mercy. All hell broke loose. My body temp felt like it shot up 200 degrees,
my body was literally vibrating, I was having what I call vertical vertigo which is very rhythmic up and down in nature,
then the floor started swinging sideways. geeeeeeeeeez. I have no doubt I was tachy in the 120’s or 140’s with that severe vibrating.
The pressure in my eyes and skull was the sensation that I was going to explode from the inside out. Then I started panting like a dog–shallow breathing.
See if I ever yell again! :roll: I was an idiot for not going to the hospital. It was that bad. I had to crawl upstairs on my hands and knees panting.
That is not MAV. I never checked my BP or heart rate. I just laid down so my body could get calm.

What have they done for your SVT and who says you don’t have POTS and SVT?
I have 2 BP monitors, one also will tell me if I have an abnormal heart rhythm (which I get from time to time–not good)
You have to get one Jen! Yes, that’s how I knew 100% I had POTS. I would never have known without it. It explained everything.
No one should have a heart rate of 105 within 5 minutes of standing. I almost keeled over that day.The eye pressure is really scary for me.
It’s like my eyes are going to explode. yeesh.

In bed, the “wave” motion as I lay there is cardio–easy. I am so sick of it all Jen I swear I could puke.
Had a really bad day today, couldn’t stand up for very long at all. Even Xanax wouldn’t bring my damn heart rate down from the high 90’s
standing up. My whole body vibrates when I’m in the 90’s and the anxiety is horrific. (I should be in the 70’s) If I sit down it drops 20 points but I still feel like crap.
I’d find another doc to talk to if I were you.

Go get a BP monitor!


I will do that Heather for sure,
God I feel like I have bloody munchausens syndrome right now, I keep **doubting everything **
About my mav and have done for a long time.

Yes I vibrate too, I just watched the video and saw her leg tremor as she calls them, and yes that’s what I get as well, but smaller vibration, my foot and arms flinch as well.

after an attack the other day, I was stacking the dishwasher, bending over, as I bent over and stood in that position, my legs and body went into this spasm tremor call it what you will, then on straitening up, it would go away.
I asked my hubby to touch my back and legs , he said yes I don’t need to touch it I can see the vibration now!
As soon as I’d straiten up again it would go away until I bent my back again.
So horrid.

My tachycardia SVT was picked up on when I collapsed onstage at a gig, that was when I had to give up singing, by the time I got to the ER my heart rate was at 250 beats a minute, they wanted to give me that heart stopping medication, But I knew about this stuff and refused it, much to the cardiologist disgust, that’s when they gave me intrevinus verapamil, it worked,
the good thing about it was, they were able to pick up a rhythm that is only found in SVT.
So I was able to be diagnosed with it.

This doesn’t mean , I don’t have other heart related stuff going on,
And I suppose they could find something during my echo next month as I said.
I have been keeping a dairy of all events Heather, eating, walking, upstairs ect…
Yes my heart rate is often a 150 beats per minute, but my blood pressure has been high all this year, it jumps up and then falls down quickly, so god knows what the heck is going on.

I will look into this and talk to my GP about it,
Thanks so much for all the info, I really appreciate it.
Maybe you should become my Dr heather???
Kimmy said the very same thing to me , after I told her what had happened.

Hugs jen

oops, they say I’m not perimeno yet, but my sister is and she’s only 2 years older than me, so it’s bloody coming,
'hence my reasons for wanting answers soooooooooooon!!!
yuckety! F#*+ety! bing bang BOOM!!! :mrgreen:

for others that are interested.

**Orthostatic Symptoms in Migraineurs **


jen :shock:

It’s curious to me why they claim this is rare in migrainuers. Although not typical or common, I’ve talked about it before on this forum. not only does my niece, as well as her two siblings, suffer with syncope and/or pre-syncope, with migraine, but so does Kira. As well, i did a Google Scholar search and came up with quite a few hits regarding orthostatic symptoms awhile back.

I guess it depends on what you define as “rare.” When the news about Janet Jackson came out they broadcasted her MAV as a “rare” disease.

All I know is, it sure isn’t anything new, and it isn’t all that uncommon.


Okay, i went back and re-read, they said “relatively rare”

And don’t stop at this first page, go on to read the entire article.

They’re idiots.
Migraines can actually be one of the symptoms of POTS, for example, which is a disorder that would fall under: orthostatic intolerance.

for me, it a matter of , what came first the chicken or the egg?
I get this feeling there’s more going on **for me **than mav. :shock:
I was rocking (dizzy) for many years before I saw visaul aura.