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Chasing Similar Stories / Advice


suziebear
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Hi everyone,

Hope you are all doing well.

As many know I have had POTS for 5 years now following the birth of my son. It has become alot worse when I became pregnant with my daughter who is now 1. I was slowly getting better and trying my best to stay positive.

About 3 weeks ago I began getting migraines with neurological auras involoving my vision etc.

Since this started my POTS seems to be getting worse day by day. I have been taking pain killers for my migraines and that takes the headache etc away but my pots is still getting worse by the day. Dizzy spells like never before, shakier standing up then before, higher tachy, ALOT more chest pain etc etc etc. Just all in all every pots symtpom is getting worse.

I can't take pots medication as my body does not tolerate meds well so I normally just smile and try to deal with it.

I have had a head and neck MRI in the past week - both clear. All new bloods in the past week - again clear. I am still doing the fluid / salt thing.

My question and I am hoping to hear as many good and bad stories as possible, How many other people have had their pots get worse and if so did it get any better again ??? Or does it just progess downwards from here? I just need to know what happened to others.

Can anyone give me any other advice. I would greatly appreciate it.

My BP is also doing normal things 90/60 through to 110/70 which is pretty normal for me.

I would really appreciate any of your stories. Please.

Thanks so much for your assistance and support.

Susan.

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good morning,

very sorry to hear that you are experiencing new difficulties... you are not alone....

my condition waxes and wanes. it is capricious. i have had "good periods" where the more challenging symptoms abated.

then there are times when i am plagued by a debilitating round of symptoms.... depression and anxiety compound and amplify all of it...

sometimes these more difficult phases last for weeks... guided imagery, surrounding myselfwith positive people and energy, stress avoidance,

good nutrition, supplementation, electrolytes/hydration, moving about even if it is simply a few steps each day---all seem to help me to regain

my strength and move toward better health. there is nothing unique in my arsenal.... these are simply measures that work best for me.

(note: i have been ill for 6 years) there were periods when i was bedridden---unable to do even the most basic tasks... i lay there thinking

that life as i knew it was over.... at times, i was simply too tired/weak to think or contemplate anything at all.... after that terrible period--

i regained a measure of strength, actually began working again (limited)... found myself walking (albeit slowly) ... and partaking in life...

there are good days and bad now. we are not sure what changed or why... but i am grateful-wholeheartedly grateful to know that improvement

and recovery are possible. i cannot say that i ever feel normal or entirely whole... in fact i have never felt "normal" since that onset 6 years ago...

now i cherish the days when i am mobile and able to think clearly, to participate and to simply be...

recognizing and accepting my limitations is difficult for me and for those around me. my energy helped to define me... i was indefatigable.

now a common cold, a minor infection, a dental ailment can undo me... however, i cling to the FACT that recovery and improvement are possible.

when i am in an acute phase--i embrace the notion that my body is remarkable and that healing is possible. then i do all that i can to help it along...

i know that that every person is unique and that my story is just that: my story.

wishing you well and closing with healing thoughts,

cordelia

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Hi Susan-

I was interested to see what you wrote about migraines. I have had episodes of whatever this is for a long time (I seem to have MCAD symptoms along with POTS). However I got worse after having my daughter 10 years ago, and then much worse during my second pregnancy with my son who is now 6. About a year and a half after he was born I started having migraines for the first time in my life, and these went on frequently until the spring of this year. My POTS seems to be getting worse too. I wish I could be more help. I recently posted about a genetic test I had - if you're interested just look at my post.

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I don't have answers - but in general would say nothing ever stays the same -- so by just that alone I'd venture to stay positive in that things will improve in time... in fact some noted physicians say that most of the time --- things do improve most assuredly over time.

But mostly wanted to share that I had an MRI of the cervical neck a year or so ago....when I got the films and do a home read in front of a living room lamp -- I was like - 'wow that doesn't look good'.... To me it looked like the spinal cord was being smushed a bit by the vertebrae and some discs... Anyway I went to an orthopedic doctor who only specializes in spines -- and he said, "that's a normal 52 year old neck" .... he said this as he looked at the MRI on the view box.

Fast forward to a visit with a neurosurgeon this week. He pulls the film up on his computer.... he looks at the image I saw intently and says after a second or two... "well there's your problem - it's quite obvious" -- ??? Then goes on to explain a neck deformity, a congenital issue also, the relationship of my symptom set to the MRI findings.... which in the end add up to an unstable cervical neck with myelopathy etc...

I only share this to say that if you get a gut feeling that your MRI in viewing it looks anything but normal.... or even if you don't see it - but feel that the docs are missing something .... to keep pressing for answers. Some docs I've learned like to shove complex cases under the rug --- and it's horrible to experience this. But persistance does often pay off in the end. So hopefully you can obtain all your records and copies on disc of your studies to take with you to a different physician for a second opinion if you feel it appropriate in your case....

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Before POTS I had migraines for years, all hormonal. It could be that. We always put all symptoms with POTS, but some happen for other reasons. Most docs are clueless about hormone balancing. I finally found one. No more migraines.

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{{suziebear}}

What a trial to be going through all this with little kids! btdt with my own issues. They may or may not be similar, but I will share. Your symptoms do sound familiar to me, though. Dizzy, shaky, low bp. Yup.

My health problems are related to my female hormones now, and I think it was involved in my onset. I nursed my second son for a long time. I was very slowly weaning him off, but went away for a conference-first time away, so my body was probably thrown by the lack of nursing. Two weeks later-a new ovulation-and whammo-neurological problems (multiple cranial nerve problems). Two weeks after that, I ended up in the ER because of neurological problems. My point being that probably my body was sensitized to the newly returning hormones and set off all this garbage. (although I'd had little problems before that)

It hasn't completely gone away since, in terms of a monthly cycle, which is how I follow myself. Some "months are similar; some months are outliers. Use a calendar and write your symptoms down. You may also see a pattern related to your monthly cycle. For example, *usually*, during ovulation, I often have trouble urinating and then right before my period I have trouble sleeping from an overactive brain and/or breakthrough partial seizures (or waking up with heart racing, at minimum); throw in postural hypotension for good measure. Two months, when I was experiencing stress, I had a lot of tachycardia. This past month, an outlier (maybe because I set off a spell of seizures early in the month), it's different again. But I still see different sets of symptoms around ovulation and before my period. Days in between are more normal. I think in terms of getting through those bad windows. (for example, started my period today-sorry if TMI!-and I breathed a sigh of relief)

What you describe, I've experienced. And it's MUCH worse on the rare days that I forget to take my anti-seizure medication. Basically, whatever changes happened in my brain back then made it very sensitive to whatever is going on with me (now I see an autonomic component that the docs never bothered to consider when they were throwing anti-epilepsy drugs or AEDs at me). Don't get me wrong-the AEDs really work! And if I don't take them, the smallest thing can make my head spin. They have been really great at stabilizing my head. Maybe that would be worth a try if many of your symptoms are neuro-related.

Some things help, like eating a self-modified diabetic diet because I'm VERY sensitive to sugar. It's low carb, with protein and/or fats thrown in, and no candy or cookies. Sugar REALLY makes my head spin and heart race, and all sorts of bad things.

Good luck!

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You said that your POTS started following the birth of your son. Was this a difficult labor where you may have lost a lot of blood? The reason why I ask is there is a condition called Sheehan's Syndrome where your pituitary is damaged during labor.

You can search google to get more information about it. Here's the wikipedia article though for the most basic info. http://en.wikipedia.org/wiki/Sheehan%27s_syndrome

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Thanks so much everyone for your replys. I really appreciate it !!!

Friedbrain - Can I ask what AED you take? I am about to start inderal to try and help with the migraines (saw the neuro on Friday) - Questioning what it will do with my BP though. Also if the inderal doesn't help we are talking of trying Topamax. Yep another road of trial and error drugs - fingers crossed just not too much error. Meds do so many horrible things to my body but what to do.

Dana, there was a bleed following the delivery of the placenta and also retain product that was removed about 3 weeks later so I am off to look at the pituraity (SP?) stuff. Thanks so much for the idea.

We are also going to stop the Yasmin birth control I take and try a progesterone only pill or maybe the Proverea injection. Not sure yet. Though a week off the Yasmin now still sees head aches.

Doesn't help we are in the middle of a HEAT WAVE and the humidity is a KILLER !!!

Once again everyone - Thank you so very much.

Susan.

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Thanks so much everyone for your replys. I really appreciate it !!!

Friedbrain - Can I ask what AED you take? I am about to start inderal to try and help with the migraines (saw the neuro on Friday) - Questioning what it will do with my BP though. Also if the inderal doesn't help we are talking of trying Topamax. Yep another road of trial and error drugs - fingers crossed just not too much error. Meds do so many horrible things to my body but what to do.

Dana, there was a bleed following the delivery of the placenta and also retain product that was removed about 3 weeks later so I am off to look at the pituraity (SP?) stuff. Thanks so much for the idea.

We are also going to stop the Yasmin birth control I take and try a progesterone only pill or maybe the Proverea injection. Not sure yet. Though a week off the Yasmin now still sees head aches.

Doesn't help we are in the middle of a HEAT WAVE and the humidity is a KILLER !!!

Once again everyone - Thank you so very much.

Susan.

Most AEDs have side effects, so it is *very much* trial and error with this class of drugs as to what side effects you can tolerate vs benefit. Didn't tolerate depakote (and it didn't completely control my seizures). I take Keppra at a pretty high dose and it stopped my seizures for a long time; when I started having breakthrough partials, I added on lyrica (which is mostly used for pain control, but worked for me with the partials for quite a while). I still have low blood pressure, so these drugs, at least, didn't change that. hth

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