Other causes of POTS?

[Melania]

Hi-Have lupus diagnosed age 15. I have many many of the symptoms of POTS now but here in this very small town I am having the hardest time getting anyone to do anything for me. Suffering 3 years now. Mine I know started first after I had a C1 neck adjustment by a chiropractor that led me to have what I now call a “spell”. I had them on and off for a year. I was very active and managed one block, one day at a time to get myself back to running 8k, biking swimming…Then I was rear ended and the spells were intensified by 10. I can not exercise now and am having spells nearly every day. And major digestive problems. Constipation to the point of my intestines feel like their on fire now, then relief only by spell causes diarrhea and urination to the point that I get dehydrated which makes my possible pots spells soooo bad. 2 docs think it is a form of dysautonomia but no one is moving on it. The referral for tilt table test had to be done by a specialist. The neuro I seen said I possibly had addisons disease or a pain disorder. Negative on the addisons. Pain disorder is absolutely ridiculous and insulting quite frankly. Internist wants me on florinef but won’t say I have any specific problem. An Emerg doc thinks its POTS and all he did was tell me to salt my food and drink electrolytes and sent me home. Fam doc has sent me for every test known to man but nothing is coming back with results. Suggestion for her? I also don’t see any info here on other causes like mine. Any comments? (AND if you docs out there can help inform my docs I’d be ever so grateful!!)

[Dr. Diana]

Hi-Have lupus diagnosed age 15. I have many many of the symptoms of POTS now but here in this very small town I am having the hardest time getting anyone to do anything for me. Suffering 3 years now. Mine I know started first after I had a C1 neck adjustment by a chiropractor that led me to have what I now call a “spell”. I had them on and off for a year. I was very active and managed one block, one day at a time to get myself back to running 8k, biking swimming…Then I was rear ended and the spells were intensified by 10. I can not exercise now and am having spells nearly every day. And major digestive problems. Constipation to the point of my intestines feel like their on fire now, then relief only by spell causes diarrhea and urination to the point that I get dehydrated which makes my possible pots spells soooo bad. 2 docs think it is a form of dysautonomia but no one is moving on it. The referral for tilt table test had to be done by a specialist. The neuro I seen said I possibly had addisons disease or a pain disorder. Negative on the addisons. Pain disorder is absolutely ridiculous and insulting quite frankly. Internist wants me on florinef but won’t say I have any specific problem. An Emerg doc thinks its POTS and all he did was tell me to salt my food and drink electrolytes and sent me home. Fam doc has sent me for every test known to man but nothing is coming back with results. Suggestion for her? I also don’t see any info here on other causes like mine. Any comments? (AND if you docs out there can help inform my docs I’d be ever so grateful!!)

Hi Melania, Do you know if you have EDS? You can check out my videos on the types and how to run through the Beighton to tell. Have you had an MRI? If so, your doc should be able to tell you if there is any evidence of C2/C1 impingement on your brain stem from the adjustment and the accident. Of course, they’ll want to rule out Chiari, too. If all comes out OK on the MRI (extension, flexion may be especially enlightening), you may have POTS that will respond to therapy as discussed in The Driscoll Theory. I think all of us can remember when our POTS was “triggered” — often by a virus, but trauma and stress are also big triggers. Have you looked into the mast cell meds and possible pressure on your brain? I’ve had all of your symptoms, and actually thought I had an Addison’s crisis a couple of times. It turned out to be SHOCK. Yikes. The SECOND best source of info on POTS (ha) in my opinion is POTSPlace.com . But please keep in mind, with mast cell treatment, treatment of hydrocephalus and CCSVI as needed, we are hitting the CAUSE of the POTS, not just treating the symptoms (as salt, Gatorade, etc will do). We are at the cusp of a new paradigm, and it’s about time!! 🙂 Big hug, Diana

[Melania]

Good Morning,
Dr.B ordered an MRI after my MVA. Just R sided protrusions at c5c6 c6c7. (No flexion/extension though) No chiari malformation but I still have pressure at the base of skull. Not 24/7 now but it comes and goes. Why is it everytime I sit at the computer I start to feel a mini spell, often when I work also (massage therapy) I believe it is the possition of my head (Flexion). Any suggestions? Sarah Hayes(doctorate in osteopathy) did orthopedic testing for alar and transverse ligs in which she stated her concern for instability and she also said I had decreased blood flow to the brain and scar tissue that has my C1 adhered to the temporal bone. I have not mentioned that to Dr.B yet. Had colonography (no hernias,elevated amount fecal matter), chalk drink to check digestive sys, CT angiogram heart-normal(done because of chest pain I get), angiogram neck just recently-no dissection(this chiro injury was 3 years ago), ultrasound of carotid artery-was reported poss mild stenosis but angiogram denied, funny thing is Dr. Loane showed me my MRI in which it is apparent that the left carotid is dilated in comparison. Also we looked at C1 and it is apparent to me that the C1 is shifted to the left. He stated that what they look for is fractures though. I can not seem to figure out how to look at it properly on my own computer. CT Angiogram of neck I will be getting a copy to see for my own eyes too. After the chiro injury for 10 months I could hear and feel my pulse right behind my left ear. The symptoms I had right after the adjustment were like a dissection. But no angiogram was done. I could not get out of bed for 3 days and by the time I got to see a doc I believe it was assumed that if I made it this long then I probably didn’t have a dissection. MRI brain post chiro-no pituitary tumour. EKGs, heart monitor which never picked up any of the heart racing that I have. But I invested in a heart monitor watch and regular blood pressure monitor. It is very apparent to me that my heart rate goes up considerably after rising from rest and sometimes in bed too for no reason. Plain xray after mva of neck no fractures, hmmm what else, tons blood work but I am not up on that YET. I have struggled through this so bad and I’ve lost the active life I used to have. All I want is for the diagnosis to be clear and state what I know that it all started with the chiro then worse by the mva. I am struggling through every day whether these docs see it or not. I believe they look at me and see I’m only 33 and slim and I do physical work, how can I be as sick as I say I am. I am, I just refuse to take away the life my kids and I know even if it is making me suffer more. Sole provider,self employed, never able to get disability insurance or life now on anything. Can you see my slight dilema here. I want someone to believe me and not say that it is just a panic attack. But No mention of EDS but I see her tomorrow and I will ask. Thank you for the reply!! It means more then you know to just have someone listen I guess and not judge.

[Dr. Diana]

Hi Melania,
I’m so sorry you are going through this, but I think this site may be able to help you. If you are not draining CSF well and you had trauma, or if your C-2/C-1 is not straight, you may be draining CSF even MORE poorly (if that makes sense). Of course I can’t diagnose you over the internet, but I’d recommend that you talk to your doctors about a trial (just a day will tell you if we hit it) of Diamox (no sulpha allergies?). Poor CSF drainage (or too much production) can mimic the symptoms of Chiari or a need for neck fusion. Yikes. I wasn’t able to look down at a desk and work — everything had to be at eye level. I completely understand that!
Did you have a chance to look at The Driscoll Theory? A lot of us with this high pressure (external communicating hydrocephalus) also have mast cell disorders, and our POTS (you may have that, guessing from your description of higher heart rate upon being vertical) is sooooo much better on mast cell medications. If we can shorten and ease your journey, we’d like to do so. Cool?

You’re among friends, here, Melania. Will you keep us up to speed on how you are doing?

Big hug,
Diana

[Momof3]

Hi I was wondering for all mast cell you are suggesting take zirtec and Zantac right? I know you say double doses…there are 75mg and 150mg of Zantac. Which one do you recommend? Can we just take one or the other? Or do you recommend both? Also is that all you need to stop mast cell. Oh and if it stops it does your body start to heal from it?

Another is if neck is twisted (which mine is) and might be cutting off spinal fluid. Then should diamox help or would you need that fixed to help the flow? I heard so many side effect of dimox. How much do you take dr. Diane? And your son bc I have a fighter who might need it!

Does mast cell cause are collagen to become more flexible? And do you think it’s the cause of autoimmune? Bc I NEVER had symptoms growing up up except scoliosis and then I had my 3 kids and after the third is when my neck started hurting. Then I found out I had an arachnoid cyst on spine at t3 and block spinal fluid so I had that drained. And at the same time right after my neurologist thought I had ms and put me on steroids and a month after that is when all my loose joints started and other eds symptoms. I know this is some kind of an autoimmune thing! Don’t know if taking treatment for autoimmune will helpor make things worse. Thanks for listening and hopefully will get your imput on all this!!!!!

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