Old Person With A New Pots Diagnosis: Advice?

[Sylvie33]

Hey everyone,

I've been on this site since last spring when I was hit with a barrage of dysautonomia symptoms. They arrived on a wave of depression (finally much better) so it was difficult to get my first neurologist to take me seriously until my small fiber biopsies came back positive in October...he was chagrined for a day or so...Basically I was hoping it was all anxiety....the least medically noxious diagnosis I could hope for.

After seeking hitting up the gastroenterologist (+ gerd), rheumatologist (- autoimmune disease, so far), ophthalmologist (signs of small fiber damage) I finally went to the cardiologist last Monday, where I was positive for POTS and OI with simple monitoring. TTT today (not fun at all). Had to stop it when my PB fell from 140/90 to 80/60! Did not faint, but was extremely nauseous and sweaty. So Vasovagal Dysautonomia, he said, noting I could have POTS or OI any old time. Does the term neurocardiogenic cover all three?

Good news for all you young folks out there...he's seen many people "outgrow" this! But at my age, with a rapid onset and clear small fiber neuropathy,....it's "serious,"

he said.

So now what? Got propanalol...10 mg.immediately helped my tachycardia. I'm due back next week for a nuclear stress test and more discussion. My very worst symptom is fatigue and I now know why....a sort of relief.

Could this be pure autonomic failure? I am working with a yoga teacher...my balance is good and I'm getting stronger (so it's not MSA). However I still have difficulty sitting unsupported without reeling and feeling jagged after ten minutes. I'm housebound.

Any advice? Tests I should have? Medication? Diet....I eat very healthily....I'm taking l-lysine, cq10, magnesium, D3, and b-12. I'm sort of cynical about them. Just got biotin for my vanishing hair. Jokes welcome

Getting used to the idea of no longer being a professor (very sad, but this is my second year on leave)....I would like to get back to painting...most of all I'd like to sit up!

Would love to hear from old vets and all you smart, experienced young people! Thanks so much!

Sylvie

[DizzyGirls]

My daughters were just diagnosed with POTS and a whole slew of other things, but the one thing that we were told to do by several different doctors is keep hydrated and eat lots of salt. Most of the non-POTSy world would cringe at the amount of salt we have to eat to feel better. It's not a cure, but it's a help. My daughter is drinking two liters of electrolyte water daily in addition to everything else she drinks. We have found that caffeine is a great help. BUT, I would caution you to test the waters on this first. It's not for everyone. Makes some people a lot worse. They also are on Florinef. Everyone is different, so you have to find what helps you and how much.

BTW, my 17-year-old is a budding artist! It's been a source of great enjoyment and therapy for her while she is unable to do much of anything else (mostly pencil and charcoal, but testing the waters with acrylics). My other daughter is 40,000 words into her first book. She narrates it to me to type because using a computer makes her dizzy. Both of my daughters suffer from severe vertigo that they now think is caused by their malfunctioning autonomic system.

Hope you continue to get the help you need! Be well.

[Sylvie33]

Hi DG,

Thanks for writing....I'm so impressed by the work of your talented and focused girls (and their mom for your continued support and encouragement!).

I'm worried about salt, for you can see my BP is high. I'm drinking coffee now!

I just really didn't realize I had severe cardiac symptoms. My (former) neuro did a quick poor man's TT and told me my 20 pts. drop in BP was below the cut-off of 30!

(Wrong I was told last week!) So I was just at a loss @ my fatigue...etc.

I am very heartened by the story of your girls....for I've left my work (and a book) behind me last year....I felt completely overwhelmed. I'm in a better now.....learning slowly to accept my new life. So nice to also be encouraged by you!

---- Sylvie

[dancer65]

I have found florinef has helped my bp I am not dizzy very often these days where before I could hardly stand up before loosing my balance.IT did take a while before it helped and I had to increase my dosage as BP was sitting at 60 / 40 most of the time. I too drink loads of water and electrolytes. I don't eat gluten or sugar as I know they cause me IBS and candida , I also eat an anti inflammatory diet which can be tough when I am fatigued really badly. I was diagnoised last year at 50 after years of been unwell, don't think been older helps the fatigue at all which is now my worst sympton alongside the muscular joint pain,

I did see you mentioned thinning hair, there are many reasons for this and different types of hairloss . Stress mental or physical , Thyroid problems, iron deficiency hormones can often be the cause or auto immune alopecia. Sadly age can be related to androgenic alopecia which can be bcommon in post menapausal women. If it is a big issue for you than a dermatologist can do a scalp biopsy to diagnose.

I am sorry you had to give up your job , that's really tough especially when you love it so much.

Hope your appointments and tests reveal some answers for you , good luck with them

[angelloz]

Welcome Sylvie,

I thought it might help to hear from another older member. My problems began at age 51, I am now 57. It has been quite a journey. I have traveled to the Cleveland Clinic as well as the Mayo. Both great places but when you live far away, follow up care and asking questions as symptoms change or crop up doesn't work. Still trying to find someone with good knowledge close to home.

My early symptoms included the opposite of fatigue, I was restless and felt very revved up. Now I have more of a fatigue problem. I also noticed numb spots and had a skin punch biopsy. At the Mayo I was diagnosed with autonomic neuropathy, along with hypovolemia. I drink constantly! Too much salt increases my migraines so it is a delicate dance.

I had to stop teaching, and I miss this everyday. I am impressed with the way you are accepting and adjusting!

Over time some things have improved. I am able to sleep some now, I don't always feel "strange and off balance" in stores. I also sort of know my symptoms better and how to deal with them.

Let me know if you have any other specific questions. I do feel like at my age my body just couldn't find it's way back to normal.

Wishing you all the best!

[p8d]

I too am older. I was felled by a virus at 52 and will be 54 next month. I also was a professor and had to give up work and am housebound. My two worst symptoms from day to now are fatigue and insomnia. I cannot keep weight on and am hyperadregenic POTS. My GI track is all messed up and I was diagnosed with Lyme (chronic) as a potential cause. I have been treating Lyme since September '15, dysautonomia since March '14. Florinef helps, salt and water and sleep when I can get it (tried many, many drugs). I'm currently being evaluated for mast cell activation disorder. I have Ehlers-Danlos according to the neurologist but no idea what type of Dr to see for that. I miss teaching and the interaction. It's lonely being housebound. A book I have found helpful is How to be Sick by Toni Bernhard. It's Buddhist in orientation and she has POTS. Keeping hope alive is the best medicine.

[lewis]

Any of the chemically made supplements like the ones you take make things worse for me especially the magnesium and b vitamins. Maybe something to look into and toy with.

[Sylvie33]

Thank you all for your open and sympathetic replies...just what I wished for...for Angelloz, let me be honest....I'm not accepting and adjusting well. I'm a lot better than I was, but each diagnosis is simultaneously reassuring (no I'm not imagining this) but also very scary. Yesterday was pretty devastating, for I'd clung to the belief this was a passing thing...yet Angelloz, your improvement is heartening, especially your ability to get out there and shop, etc. I'm hoping that I'll adjust the way you have.

Dancer, thank you for addressing my hair (loss!)...I havent gotten my thyroid tests back, but I'm assuming it's due to neuropathy. My son was here today, and scoffed at the idea I look like I'm losing it....but it's clear to me (there was more on my brush today than on my head). Lewis, I really like all your posts, and I'm sure you're right about supplements...I have no reaction I know of, but I'm going to try the biotin. I take what you have written to others about exercising seriously, (I just finished a session with my yoga teacher; I think it's the best thing I'm doing now).

p8d, we think alike. I had joined a Buddhist temple when I was first symptomatic and I bought Toni Bernhard's book before I knew what it meant to be really sick and bedbound. She's great...I recommend her to all who are reading this. Now I'm too sick to even sit at the temple to meditate, but luckily my husband got into it....I'm so glad, for its a great outlet for all the stress that comes with this.

P8d and Angelloz, I do appreciate what you each wrote about teaching....for I'm grieving...I held out hope until yesterday I could somehow go back....I think the frank prognosis I got (and I think this is a really, good, kind doc....found here, of course) has nixed this idea.

My son, who flew in from LA today, was worried I am spending time on this forum, but I think it's so great to feel surrounded by people who understand all the oddities of this illness....it defies description.

I know I just have to take time to feel well enough to put myself on some sort of new path....thank you so much for helping me. Please feel free to PM me if you'd like to talk more about any issues raised here!

Sylvie

[Nymph]

Hi Sylvie,

May I ask what autoimmune disorder you have? I have Sjogren's, which I know is more common in older women (I am now 37 but have had this for at least 8 years) and can cause neuropathy. I know that other AIs can also cause neuropathy. There are a couple of us here with Sjogren's. The good news is that there are many new treatments being tested that show promise for treating AI and if that is the cause of your neuropathy then it would be worth exploring your options.

On hair loss, I find that I usually have a shedding period about a month or so after a flare. My recent sheds have not been as heavy, I believe due to treatment (Plaquenil). I also take biotin regularly and believe that helps. Vit D is very important for autoimmune and I take a slew of other supplements that are specific to my needs.

I am currently pursuing a teaching degree (MAT secondary social studies) and am student teaching. It is challenging. I love it. I am totally exhausted by the time I get home at 4 pm. I think I can do it, but I don't know how long that will last. So I am going into this with the attitude of enjoying it while I can. When I can no longer teach I have a book to write, so I will have something to anticipate! There is a big adjustment time with chronic illness as with any major life change. You will find your way through, I am sure!

[valiz]

Sylvie33 Welcome to the forum. I am an older member here. I believe I had dysautonomia from about age 13. I had a number of syncope and presyncope episodes. I also had flushing, fatigue, chest pain. I was able to get through nurses training after high school. When I was in my mid-late 20's I feel I went through a "remission". About 15 years later symptoms started returning along with other nasty new symptoms. After a number of trips to the ER and still undiagnosed I was referred to a nephrologist because of dehydration and diabetes insipitus like symptoms. He referred me to Johns Hopkins, where I had my TTT. I was diagnosed with POTS and NMH (NCS). I had a seizure and fainted and had my B/P bottom out. I get weakness to the point of being unable to to do anything for myself and sometimes cannot talk even after my syncope episodes and it lasts around 2 hours. According to my doctor I no longer meet the criteria for POTS but now my diagnosis is PAF and NMH. Meds that have helped me are Fludrocort, stablized at .3mg a day, Venlafaxine 75 mg and Northera 300mg 3 times a day. Midodrine did not help me. I had very low pressure all the time but your doctor will hopefully find what helps for you. The worst symptoms I still have are fatigue, insomnia, neuropathy and much muscle, joint pain. I have DDD in all areas of the spine.

I sympathize with your diagnosis and the fact that you have had to take a LOA from you profession. I had to give up my nursing job as well. I hope you can find a good diagnostician....very important and also a doctor that can treat effectively and sometimes "out of the box". Prayers for improvement for you.

Liz

[kitt]

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[Sylvie33]

More lovely replies and thank you for your stories....I feel so heartened by your company.

Nymph...I haven't gotten all my results back, but so far it does not look like I have an AI disorder...I've asked for a lip biopsy for Sjogrens, but have been discouraged by my rheumatologist. She owes me a call, so I'll bring it up again. I know I'm the right age for it (you young thing!). Great that you're pushing through with your studies and teaching....and that you have a plan b. So smart. My sister was a state daycare lobbyist and became a classroom teacher at 45. When she was 55 she got another masters and became a librarian....she's now 64 and going strong....lots of roads you might go down.

Gosh Liz, you have been through so much....I'll PM to learn more about your meds, we share a lot of symptoms,and I'm hopeful, since this new diagnosis, I might be able to feel more even...I can only describe how I feel as very "jagged," and fatigued, now I know why, with my BP all over the place. I'm grateful for your support and prayers, and impressed you have accomplished all that you have.

Kitt...what great information. I've been afraid to drive for months. I've never fainted, but was given the term presyncope on Wednesday....well, that's it. I live in NYC and am far more afraid of running someone down than a car accident. On the other hand, subway stairs and standing are challenging. Actually, everything now seems challenging...I'm really hoping for just an improvement with meds...a little bit...I'll be happy with that. I can understand how the work of a pacemaker might be superseded by a faulty autonomic system. Good advice. The idea of surgery of any kind seems overwhelming....Ill also look up more on catecholamines...I'm clueless. Can you fill me in a bit more?

As for yoga...I was a fanatic for ten years. I gave it up over a year ago because one of my early symptoms was falling. Now, after just two months (after total deconditioning) I'm seeing some results. But it's HARD work, even these baby steps, when it used to be pure joy. I'm so lucky to have a great teacher.....she totally gets it..

Once again, thanks so much....you've all been so helpful. Please PM me if you'd like to talk more, or if I can be helpful to you in any way....

Sylvie

[SarahA33]

Hello!

I hope you are recovering well from your tilt table!

I second Kitt's suggestion of looking into catecholamine levels. Perhaps your doctor will be on board with this. I hope you don't mind that I share my thoughts on Catecholamine testing. Catecholamines (Norepinephrine and Epinephrine) are stress hormones and basically responsible for the fight or fight response. My understanding is that our adrenal's produce a lot of this hormone which then can increase heart rate and blood pressure. I also have high Norepinephrine levels, very common in POTS w/ a hyper component, and I often have tremors, palpatations, headaches, high BP, sweating, all of which is helped immensely by Clonidine and Propranolol, both of which are known to suppress adrenalin. In my case, I know my anxiety is tied into all this, as the propranolol, Clonidine and Ativan work so well for symptom relief. Ivabradine controls the tachycardia, but the med combo above helps to keep my symptoms at bay.

Also, with hypovolemic POTS patients, they can experience high catecholamine levels also. The low blood volume causes the body to release adrenaline I believe. I also think that low blood pressure or having BP that is constantly trying to regulate itself might cause adrenalin to be produced. Of course, I'm not a doctor, so this is all just my best attempt at helping you find new ideas and possibly and Oprah AHA moment! Possibly you can bring this up to your doctors.

Regarding the testing for this, I had mine initially done during my tilt table. Then, I had also it done at the lab. I had to sit for an hour in a room before the tech collected the samples. The last time I had it done was in Cleveland during the blood volume testing, supine and upright. I've also had it done with a 24 hour Urine Collection. These links are really useful: http://www.dinet.org/index.php/information-resources/pots-place/pots-detection and this article is great https://lethargicsmiles.wordpress.com/2013/09/27/how-would-a-doctor-determine-if-i-have-hyperadrenergic-pots-all-about-catecholamine-testing-in-pots/

Take care!

Sarah

[looneymom]

Hello,

I have a son that is 15 and I sure hope he outgrows POTS. He has had quite a journey so far. However, not long after his diagnosis, when he was 11, he had a nasty virus and totally went down on me. His muscles turned to jello. He could sit up and 24 hours later after this virus hit, he was down for the count. All of his muscles were affected and I had to rent a body lift because he was 5'10" and weighed 180lbs. He could not use any muscles to support himself in sitting, standing, or walking. His cardiologist was able to get him into a neurologist and she did a spinal tap and checked his levels of Amino Acids, serotinon, and dopamine levels. Some of his amino acids were way too low and so was his serotinon. So my son was started on an amino acid supplement from the GNC store. One month later, he was able to sit up on his own, stand, and walk on his own. Later on he started drinking a protein shake that was loaded with amino acids and it's also a GNC product. Amino acids and protein play a big role in muscle strength, nerve signaling, and balancing neurotransmitters. My son still takes the amino acid supplement every day. Those were dark days for us. Since being on the amino acid supplement, he has never experienced this jello muscle situation. Eventually, our cardiologist did figure out the underying cause for my son's POTS. He had autoimmune neuro antibodies in the brain that caused problems with the autonomic nervous system, and other severe neuroloical problems. These antibodies were caused by infections like strep, and mycoplasma pneumonia. My son has been through plasma exchange treatment and is doing much better. His POTS is not gone but he is much more functional. A good exercise that helps build the core muscles in the back is sitting up on a therapy ball. My son has week core muscles too. He started sitting on the ball 30 seconds a day for seven days a week. He raised it 30 seonds every week and he could sit on the ball and watch his favorite tv show. My son uses the 75 inch ball because he is 6' 1". He is sitting up for 17 minutes now and has started raising the time up a minute every since the beginning of January. Getting testing for amino acids and the testing that Sarah suggested would probably be helpful. My son does have problems with dopamine and norephrinphrine levels. He needs to go through the testing that Sarah has mentioned but he cannot stand up for a long peroid of time yet. Wishing you the best and hope you find some answers soon.

[Sylvie33]

Sarah, I PM'd you -- would love to talk catechoramines when I read your cites! (Now, could I ever imagine writing that sentence even a week ago?!).

Rachel,

Your story is amazing -- I have read your various posts about your son, but had no idea he was so debilitated at first. It must have been terrifying, and the strength and resolve of the two of you is mind-boggling and inspiring. I have read it several times to give myself heart....It amazes me that you both clearly overcame so much fear, and opened yourself up to be strong and very educated, to get to where you two are today.

Like many "newbies," I feel my greatest challenge is just getting over my own fear, anxiety and depression about being ill. When I have my brief windows of emotional respite, I feel I can manage all that comes along with this illness. I have had other medical issues in the past -- a brain tumor (benign) as well as a cerebral hemorrhage -- and I just sailed through. I recovered in record time, and never doubted my ability to get well. I feel very differently with this -- why I so appreciate your telling me your and your son's story.

Thank you so much for sharing it with me -- and I wish you both the best -- I now know just how far you both have come when I read your posts!

--Sylvie