Is It Pots?

[Momof3boys]

Hello all. I've been lurking on this web site reading thru questions and answers for the past year now. I figured it's time to join the fun.

My story starts exactly one year ago. I was 38, and went in for a hysterectomy & cholecystectomy. Hysterectomy due to sever menstrual pains, polycystic ovaries, and pelvic congestion syndrome. The cholecystectomy was because of chest pain I was afraid was a heart attack. Not a heart attack, but because I had mild right sided pain afterwards the ER did an ultrasound and saw my gall bladder was full of stones. In hind sight, I've had the same chest pain since, and now have no gallbladder so I think it as a coincidental finding. Any how, surgery went fine, recovery going good, 9 days post op I started having pain when I took a deep breathe, or laughed, or eventually talked. I returned to the ER after being told I was fine by a physician earlier in the day. My husband was sure it was my back & I just needed to go to the chiropractor. Turns out I had 3 pulmonary embolisms, so I spent the next week in ICU, and the next 4 months on blood thinners.

My hope with the hysterectomy, was I would be able to get off of all my meds, thinking the hormone imbalance was my main problem with fatigue. HA! I slowly but surely went back on an antidepressant, I asked for cymbalta because I had horrible joint pain that I had never had before. I started on Provigil because I had taken it in the past for "somnolence syndrome" and it helped me get thru the day. Eventually my primary added Bupropion at my request because I felt awesome on it way back when, but it made me very irritable so I stopped it. The cymbalta was helping my joint pain, but making me sleepy. I was hoping the negative side effects of cymbalta & bupropion would cancel each other out, which they luckily do.

I have always had mild OI, nothing that I treated. I just get dizzy when I stand up way more often than the average girl. Always had low BP. Heat has for the last few years made me weak. I love a hot bath, but usually need to lay down for at least 10 minutes after so I don't pass out. After coming home from ICU I could hardly walk up the stairs for a month. I was SO tired. I knew I needed recovery time, but I also knew something was very different. The first time I almost passed out I thought maybe m asthma was making me so tired & week. I got out the pulse ox, and my HR was 169, standing in the hallway! I'm an RN so I started putting my symptoms together and ran across POTS. The bupropion & provigil were requested after I learned about POTS because I knew they were used as treatments. My primary sent me to a cardiologist who encouraged, salt, water, and support hose. He mentioned POTS on his own, but didn't think that was it. The support hose work wonders! My BP goes up 30 points with them on.. This spring when it got too hot for support hose, I went back to the cardiologist. He seemed perplexed, by my young age & symptoms on all of the medication I was on. He did though see my BP go down, and HR go up from laying, to sitting, to standing, so he prescribed florinef. It worked great the first month or two, then seemed to stop, so i made another appointment with the cardiologist. This time I brought info about POTS from Johns Hopkins with me for him to read. I highlighted all of the symptoms I had. He agreed to order a tilt table. He was still perplexed, and said he would need to read more on POTS.

Last week I had the tilt test. What really irks me, is that they gave me a saline infusion before the test! Yup, saline infusion, that many say works wonders. It did. I felt awesome that day, and pretty good the two following days. In the 1st ten minutes my HR went from 80, to 107. In the first ten after nitroglycenie it went from 108 to 149. My BP dipped slightly, but not much. I did feel on a couple of occasions my worst symptom which is extreme weakness thru my neck, shoulders, and chest. It's like someone is below me pulling soon on my shoulders. Arms and legs feel weak as well, but the extreme is thru my torso. The nurse said my HR went up every time I said I had the weak feeling. My BP was uneventful thru the test. Low normal, with little fluctuation.

The creep dr that was there for the test said not POTS. I need to drink more & add salt. Never mind I drink 3-4 liters per day & supplement at least 2 grams of salt daily. I told him that & he said good. I should try support hose. I told him I do and they make a world of difference, but I really struggle when it's too hot to wear them. We then went into a down ward spiral of him asking if I don't have AC, me asking if I'm never supposed to go outside again, him saying I can I just need to wear support hose & pants, me saying I would pass out from overheating if I did that during the summer, him then asking again " don't you have air conditioning?" It ended with me crying.

In addition to this, last spring I went to the eye doctor. He was very concerned. I was developing a cataract. Big change since last time I saw him a year earlier. He prescribed glasses. A month ago I felt like my vision was getting worse again. I never really like the guy who said I was developing cataracts, so I went to my sons eye dr. She agreed the cataract in my left eye was much more than she would expect for a 39 year old. She was concerned at the prescription change in my right eye over the 6 months since my last exam with the other guy. She was also concerned about my dry eyes to the point of writing a prescription for steroid drops for a month, & restasis for 6 months. I've always had dry eyes, they don't feel any different. She says I now need bifocals!

I can't help but think the vision stuff is related to the POTS stuff. The only thing I can find on medical issues & cataracts is hypoparathyroidism, which is frequently found with Addisons Disease, which has very similar symptoms as POTS, which makes me think I'm a hypochondriac!

Anyone with anything similar? I have an appointment with my cardiologist in 3 weeks. Wondering if I should be looking for an endocrinologist as well. If anyone has a recommendation for one in KC I'd love to know about it.

Sorry for such a long post. I guess I should not have just lurked around here for the past year.

Thanks for listening/reading. Any advise is welcome & appreciated.

[corina]

Hi momof3boys, welcome to the forum! I'm sorry your doctors appointment went so bad. I hope your cardio appointment will be much better. I would discuss the infusion you had pre TTT. Also I think an endo could be of help. Good luck in finding answers!

[kayjay]

I did not have nitroglycerin during my tilt- I had saline for my first tilt. My hr increase was almost 100 bpm.

I wasn't allowed to eat the morning of my test but I was allowed to drink water. I had a clear and robust response to the tilt.

My second and third tilts were only 10 min. I did not fast for those and I did not have saline.

[kayjay]

Also for those of us who have had saline for tilts- it eliminated the possibility that my symptoms were due to dehydration. I supposed some healthy people could fail a tilt table by dehydrating themselves.

I also don't know how common it is to be given nitroglycerin during a tilt. Perhaps someone else has some information.

[MomtoGiuliana]

Hi momof3boys

So sorry you are having a difficult time right now.

Surgery can be a trigger to make dysautonomia much worse (sounds like you had mild symptoms prior to this). Most likely this is temporary, or can be improved with the correct medications/treatments.

Dryness could be a symptom of dehydration and typically with POTS anyway, it can be hard to stay well-hydrated. But it can also be a symptom of Sjogren's syndrome, which I have noticed some people on this forum have been diagnosed with, along with OI. You may want to ask your doctor about that just to rule that out.

Hope the cardiologist is helpful.

[kayjay]

One more thought- you can have Orthostatic Intolerance without POTS. Mayo clinic diagnosed me with POTS and OI. You can have one or other or both.

[margiebee]

Your symptoms sound A LOT like me, even down to the joint pain.

I was diagnosed with POTS from a tilt test, but didn't recieve any saline as part of that. From my understanding the saline would mainly help if you have hypovolemic POTS (which I do not). But I still feel better after saline so in my opinion I think that could've messed with your results.

The refusal to understand on your doctors part is a pretty common experience, I originally had seen just a general cardiologist, and he told me "well it seems like POTS, but that is really rare so I don't think you have that". Because apparently if a disorder is rare, in his mind nobody can have it. Or certainly not "hypochondriacs" like us. After that I had a severe episode in my primary care doctor's office, which was very helpful in scoring me a referral to the POTS specialist at the Cleveland Clinic, who diagnosed me with no issue. I think that if you're seeing a doctor who doesn't specialize in POTS, the chances of getting a diagnosis or any treatment other than "drink more water" is slim.

Funny that you should bring up the parathyroid though, because I'm also being evaluated for issues with that right now too. I'd definitely recommend seeing an Endo doc, if nothing else in my experience they are the most thorough doctors available and are able to evaluate you for a wide variety of things.

[Momof3boys]

Thanks for the responses. My cardiologist called this am and has called in an rx for midrodine. Every time I have checked in the past year, and every time the dr has checked, my resting HR is 90-100 & shoots up into the 150's to 160's with a minute of standing up. My normal BP of 90ish/70ish also drops when I stand. My home cuff usually is unable to read a standing BP if I'm not wearing compression hose. I mostly wanted the tilt so there would be official documentation if my dr were to retire, move, get hit by a bus, whatever. I am certain the saline made the difference in my tilt, because my lowest BP on the tilt table was 82/56 & that was after the nitroglycerine. Since it's cooling off here in kansas I am fine with the compression hose & prefer them over meds. We are vacationing in Florida in 2 weeks though, so I will probably try the midrodine there. I just wanted to figure this out now rather than waiting until spring/summer when it's too warm for compression hose, but they are my only option to get my BP up and feel well.

The other thing that makes me question POTS as the correct or sole dx, is the weakness feeling. It's like gravity is pulling down on me harder than it should. It happens every time I climb the stair carrying something (or someone). I haven't read about anyone describing a feeling like that. The light headed and dizzy doesn't bother me so much as I know / can feel how far I can go before I need to sit down or I'll pass out. The weakness part makes me think neuro, but then I'm back to wondering if I've become a hypochondriac. I should not need a cardio, endo and neurologist for Pete's sake!

Worth mentioning also, I have Raynauds, unofficially dx'd by a lactation consultant while I had trouble breast feeding my oldest. ( it can affect nipples as well). I simply avoid cold as much as humanly possible. My ears, fingers, and toes are in extreme pain if they get too cold. People think I'm a weanie if it's not that cold, but they hurt. I've never mentioned it to a doctor when it's pretty easily treated (for me anyways) by avoiding the cold.

Margibee- how long ago were you diagnosed? Have you had vision issues as well? You said our symptoms sound similar. Do you have any other dx, or just the pots? Thanks for the input on endo's being very through in your experience. That statement alone makes me lean towards finding one.

[margiebee]

I have had symptoms since I was around 10 but just got diagnosed a year ago. So about 10 years from onset to diagnosis. I have slightly different eye issues, I have motility issues with my eyes where they can't focus quickly, but I have no explaination for that yet.

As far as other diagnosis, the only other thing I'm dealing with currently is a vitamin D deficiency and potential fibro. I have had thyroid nodules and have had half of my thyroid removed because of that, at a relatively young age. As a wonderful doctor told me recently, "you POTS people never only have POTS" haha. But yeah other than that, I'm just slowly working towards figuring out the type of POTS I have, which as of recent testing seems to be looking like a genetically linked form, possibly autoimmune based. My brother and dad both have POTS symptoms, and that side of the family also has a history of autoimmune illness. I think finding that kind of thing out is vital.

But as for feeling like a hypochondriac, I think that's something we can all relate to. But don't make yourself feel guilty for simply trying to find answers so you can feel better!

[Chaos]

I can relate to several parts of your post. My POTS symptoms started initially after a hysterectomy. A beta blocker was enough at that time to get me back to work but I wasn't ever back to my pre-op condition. Eighteen months later I had another surgery, followed by a post-op infection which left me with the POTS symptoms plus more neuro symptoms (weakness, paresthesias, Raynauds, never ending fatigue, balance loss, temperature regulation problems, etc etc.) Like you, I have had orthostatic hypotension most of my life, but it never was much of an issue. (So, everything goes black when I stand up. Just stop and wait and it comes back in a minute,right?) Likewise, migraines and reactive hypoglycemia. However, those all became much bigger issues when all this other stuff came up.

My daughter had pulmonary emboli last year and has also been recently diagnosed with POTS. I think she actually started exhibiting symptoms 6 years ago when she had major surgery. We have HR challenges when we go up stairs together to see who has the faster HR at the top.

According to my POTS neuro, anesthesia is frequently a trigger for this and is known to cause "full blown neuropathy".

I've been diagnosed with low blood volume, EDS, autonomic neuropathy, as well as "most likely an autoimmune" source for my POTS. I seem to cover most types.

Sorry you're having to deal with this as well. I second MomtoGuliana's idea to check into Sjogren's syndrome. It can mimic a lot of dysautonomia symptoms.

Don't feel like a hypochondriac. You're being your own advocate and that's frankly the ONLY way you are going to get any help with this condition.

Hang in there!

[Momof3boys]

Well today has been a good day! I decided to try the Midrodine instead of waiting until vacation in case it made me sick. I feel like a million bucks! I've ran errands, cleaned the house, and still have energy. Just as good, I got the name of another gal who is new here thru "meet the members", who lives not far away. She was just diagnosed with POTS by an area doctor who studied and worked at cleavland clinic and is very familiar with pots. I have a new patient consult Dec 5th! I'm going to wait on the endo for now. If this new doc is familiar with Pots, he should know what lab work to order to evaluate my other symptoms. I really don't want to have to try and talk a new doctor into ordering labs. Thanks for the replies. While I don't like knowing there are other people suffering, it is very comforting to hear the stories & know I'm not just lazy or crazy.