Dr Diana, Barbara… or anyone willing to help!

[kfelty]

Hello,
First I wanted to thank everyone for their informative posts and videos. If it weren’t for this website I probably would have never been diagnosed with POTS. I have been having symptoms all of my life but always just dealt with it because anytime you bring up random symptoms, you’re labeled as “crazy”. All of my symptoms exacerbated in January 2014 and unfortunately I have been unable to work since then. I went from doctor to doctor with no results. Finally an electrophysiologist diagnosed me with POTS and suspects that I have EDS and mast cell activation. He told me to find a specialist so I did extensive research and came across Dr. francomano. Unfortunately it takes about 17 months to see her, so in the meanwhile I am still on the hunt. I live in New Jersey by the way. Currently I am on midodrine, ddavp, and mestinon along with zyrtec and Zantac. Since I’ve been out of work I have been unable to do much of anything for myself… I would go days without bathing because I couldn’t stay upright. I would have syncope and sever flushing on my chest and up my neck and my face… I have always flushed on occasion but it has NEVER been this bad. I get terrible pain in my occipital region and my neck and back. I have had migraines since I was 8 but these headaches are different. I have tried bringing up “diamox” to doctors and they just look at me as though I have three heads. I also get blurry vision. I have degenerative disc disease in my cervical spine and straightening to the neck… And also herniation to c-6-c-7 and multiple bulges on different levels. Also spondolotic ridging and I think it’s encroaching the nerve bilaterally… I know I’m all over the place and I know I haven’t given a detailed history of my symptoms or conditions… But if anyone can please lead me in the right direction bc I feel as though systemically my whole body is sick. Since being treated by my pots specialist I am able to sit upright for much longer… But I still can’t walk far… For instance going to the grocery store is completely out of the question. I suspect that I have the hyperadrenergic form of pots but I was never tested for it.

[Barbara]

Perhaps you need a philadelphia collar for starters to help avoid spinal cord insults by your rogue disks (and instability), also it will help hold your head in good relationship with your neck, to help the flow of cerebrospinal fluid. Certainly wear it whilst carrying out tasks that involve a lot of head or neck movement.

Secondly make sure you are getting enough SALT, since the ‘low-salt’ nonsense that many people have taken on board is definately multiplying our problems. Salt is an essential nutrient, needed for correct neurotransmission and proper digestion of food. I’ve certainly felt a lot better this year by ensuring I get at least 2-3 grams of salt every single day. I’m now off the Zantac totally and I never have any stomach problems. Many of our problems are caused by poor digestion and and what if much of our pain was caused by malfunctioning neurotransmitters ?

Thirdly, Make sure you get protein and vitamin C each and every single day, to help your body produce enough quality collagen to carry out any repairs because your body is in great need of help, at the moment. A multivitamin with added minerals would help too. I’d take Epsom Salt baths (or footbaths) to replenish the magnesium that your drug regime may have depleted, this should make you feel a bit better too. Have you seen the info on Magnesium on this site ?

Have you had a head MRI, if so, what were the results ?
Regards
Barbara
(UK)

[kfelty]

Hello Barbara,
Thank you for your reply! I have been consuming ALOT of salt and water daily… I should invest in a Philadelphia collar actually. I was taking prilosec for a year for gastric ulcers but they recently healed so I have discontinued that. Somehow I feel that taking excess amounts of antacids can cause “low” or not enough acid which can mimic symptoms of an over production of acid???. Im currently taking the zyrtec Zantac combo in hopes to relieve the symptoms of the mast cell symptoms. I have a doctor that is dealing with my POTS but I have yet to find a doctor that is well versed in the correlation between POTS, EDS, mast cells, GI issues, insomnia, pain and everything else going on in my body. Im continuing with the z/z combo because I wonder if inflammation plays apart in all of my POTS symptoms because the red blotches on my skin have definitely gotten worse since my symptoms worsened. Im the one who brought up the z/z combo to my pots specialist and he told me to try it so I asked what dosage should I use and he said whatever the bottle recommends… So I’m not even sure if im taking enough zyrtec throughout the day?. I just wish someone could look at the whole picture and put all of the pieces to the puzzle together…
Thank you again for your time!!!
~Kelly

[kfelty]

… And yes I had a brain MRI in January I believe and the results were “normal” but somehow I find that hard to believe… For instance, I had a recumbent MRI of my cervical spine in November 2012 and they only noted a herniation to c6-c7… But recently I had an UPRIGHT MRI of my cervial spine and mannnnny other things were noted… So that makes me wonder about the brain MRI…

[Barbara]

I agree with you about the antacids, low stomach acid causes great problems that are misinterpreted for ‘high-acid’ issues. Antacids also serously deplete magnesium, as do many painkillers, you need to search for it on this site, there is much very useful info. Magnesium and the salt itself should help your stomach issues improve, as I say, I am off stomach meds altogether and things are working great. Try not to stay on the Zantac for too long, using the above should help, then you can come off them altogether.

I’m off the Zyrtec too and almost off the Diamox and I’m doing good.

Regarding inflammation, there are nutritional things you could try, I now include Turmeric in my food wherever possible, whether it’s stirred in soup or a yogurt dip, or as a quick fix, just a quarter teaspoon in a mug of Marmite, Bovril, Vegemite before bed seems to do the trick. I also recommend adding cinnamon to soups, cakes, or just have with honey on toast, etc as this reduces pain too.

Regarding the red blotches, putting iodised salt on everything and taking extra Vitamin C regularly throughout the day, should help improve it. Let me know if any of this helps.
Barbara
(UK)

Hello Barbara,
Thank you for your reply! I have been consuming ALOT of salt and water daily… I should invest in a Philadelphia collar actually. I was taking prilosec for a year for gastric ulcers but they recently healed so I have discontinued that. Somehow I feel that taking excess amounts of antacids can cause “low” or not enough acid which can mimic symptoms of an over production of acid???. Im currently taking the zyrtec Zantac combo in hopes to relieve the symptoms of the mast cell symptoms. I have a doctor that is dealing with my POTS but I have yet to find a doctor that is well versed in the correlation between POTS, EDS, mast cells, GI issues, insomnia, pain and everything else going on in my body. Im continuing with the z/z combo because I wonder if inflammation plays apart in all of my POTS symptoms because the red blotches on my skin have definitely gotten worse since my symptoms worsened. Im the one who brought up the z/z combo to my pots specialist and he told me to try it so I asked what dosage should I use and he said whatever the bottle recommends… So I’m not even sure if im taking enough zyrtec throughout the day?. I just wish someone could look at the whole picture and put all of the pieces to the puzzle together…
Thank you again for your time!!!
~Kelly

[kfelty]

Hello again!
Thank you for your help. :-). Before i was finally diagnosed with pots, i was CONVINCED that i was deficient in magnesium but my primary care physician rolled his eyes at that theory and he finally ordered a serum blood test and of course that came back negative… But i do know that magnesium is on a cellular level so the blood test might not be sufficient. I’ve read in your posts and others that Epson salt baths help… Is there a specific amount that you put into the water, or just pour it in??? Hahaha. And do you use it everyday? And if i wanted to use a supplement, how do i know which to use? Because i know that there are different forms. And regarding vitamin c, would a multivitamin suffice or should i use a separate vitamin c supplement? I try my best to get my nutrients from the foods i eat, but just to cover all bases just in case I’m not digesting everything properly.
Thank you again,
Kelly

[Barbara]

Hi Kelly,
As far as I understand it, the body just uptakes the amount it needs, through the skin, so I just put a handful of Epsom Salts twice a week, in my bath. I also make a cream which I have massaged into my legs twice a week, as follows:-
dissolve a level tablespoonful of Epsom Salts in the minimum amount of boiling water for it to dissolve,
add to it about 5 times more (in volume) of melted coconut oil,
squeeze in the contents of 3 vitamin E gelcaps,
add a couple of teaspoons of a simple type of soft skin cream (I use Diprobase)
You have to keep shaking it though to ensure it mixes well, while it sets.

This is also a good cream to rub in and leave in overnight, on anyone suffering from an itchy scalp, by the way.

Vitamin C, as you say, is best gleaned from fresh fruits and veggies, simple fresh squeezed orange juice, grapefruit juice, or diluted lemon juice or lime juice, berry smoothies are good and blended smooth textured soups made from any greens or sweet potato, or something like that – don’t forget to add Turmeric & Cinnamon (AND make sure you wash absolutely everything!).

Regards
Barbara
(UK)

[kfelty]

Hi Barbara,
I was just wondering how often should I wear the Philadelphia collar? Is that something you are supposed to sleep with? And also would that decondition the muscles in my neck?. My headaches have been progressively worse and now they are everyday.
Thank you!
Kelly

[Barbara]

Hi Kelly,
Well lets just put it this way. I have worn a philadelphia collar 24/7 since 2007, in fact for the first few years I also wore it attached to a body brace, which held most of my upper back fairly rigid too. These days I still wear the collar 24/7 (wonderfully pain free, by the way – in contrast to the severe lower ‘back of head’ pain, that I endured for 5 years, prior to the collar, following my fall!). The collar also diminished other various body pains to a more tolerable level and the most severe pain, which I endured several times each night, it irradicated altogether (absolutely wonderful!).

I can still move my head and neck within the collar but it’s controlled – i.e. it stops me from going into full flexion and compressing my brainstem, it also stops me from making sharp movements, it holds my head in a good relationship with my neck, allowing optimum movement of cerebrospinal fluid between inside my skull and spinal column, at all times.

I take it off every day to wash the skin area and the collar (and change the linings – very important to stop skin reactions). This year, I have also occasionally sat with it off (if I know I’m going to be sitting still!). I can report that there is nothing at all deficient in my muscles, they all work as they did before my accident in 2002, there is no pain – nor is there any head drop, I am fully upright. Note, I suffered head drop for 5 years following my accident, prior to my collar being fitted.

I still have full range of motion of my spine and the only restriction I have, is that of rotation at the head/neck junction but, having said that, it is the same level of restriction that became apparent immediately after my fall, it’s certainly no worse and at least now, it’s pain free.

I should point out that you need to make sure the collar is the right size.
Regards
Barbara
(UK)

[Violet]

for the first few years I also wore it attached to a body brace, which held most of my upper back fairly rigid too

Do you perchance have any recommendations for upper body bracing, that is not expensive?

[Author]

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