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Life-Time Of Symptoms, Just Diagnosed At 60.


circuscat

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Hello- I am new to this forum and new to the whole idea of dysautonomia and just looking for information.

After a horrible nine months where I thought I was possibly loosing my mind, I got a diagnosis of global autonomic dysfunction from a neurologist. He did a zillion tests to rule out causes for it (all negative), and then simply said, "All you can do is treat the symptoms".

At that point I basically did not have a life. Suffering from extreme fatigue, dizziness, weakness, extreme nausea and severe headaches.

I have suffered from digestive issues my entire life. Had horrible tummy aches as a child and had exploratory surgery at 12 to try to figure out why (all they found was six inches of my small bowel attached to my stomach, which was cut loose). At 40 I was diagnosed with ulcerative colitis based on colonoscopy biopsies and fought that for about seven years, at which point it cleared up. I have been rediagnosed with probably ischemic colitis (at that time) because UC doesn't usually just clear up.

I have always had bouts of nausea and vomiting so severe that it required trips to the ER for IV fluids, anti-emetics, and pain meds. This usually occured a couple of times a year and the diagnosis was always either gastroenteritis or possible food poisoning. Then the episodes began to increase in frequency and severity until I was basically down to eating a liquid diet.I was being seen in urgent care about once a month for the IV fluids/anti-emetic treatment. I was taken to the ER by ambulance (nearest hosp. is two hours away) on two occasions- both times all tests were normal. My GI doc did every test he could think of- all normal. Finally he sent me to Stanford for a second opinion and I was diagnosed with small bowel dysmotility and colon inertia.

MORE tests to rule out auto-immune diseases, and treatment of desipramine to help fight nausea, domperidone for a prokinetic, and big diet changes (very small, frequent meals, no diary, gluten, beef, corn, etc.). It took a long time but I finally started feeling better. I was also put on miralax for colon inertia but it did nothing, so I switched to magnesium oxide and as long as I watch my diet, drink a lot of fluids and take the mag. I am doing okay. I had not realized (I know this seems crazy) that it wasn't "normal" to go 8 days between BMs.

I also have terrible headaches that don't respond to the usual migraine drugs, did not respond to O2 treatment, and I am allergic to all codone/codeine drugs, and can't take oral NSAIDs. Those headaches ended me up at the Stanford Headache clinic and i was diagnosed with Trigeminal Autonomic Cephalgia (because of the autonomic symptoms involved with the headache- earache, stuffed nose, tearing eye, etc.).

I have always had trouble with postural hypotension and as a kid (12) once blacked out completely and hit the floor when I got up out of my seat at school. Can't tolerate heat- it literally makes me ill, and my mother told me that as an infant the heat bothered me so much that they finally got air-conditioning.

I also have a eustacian tube that doesn't respond to pressure during an audiology test, which confused the technician. The optometrist I went to to get my eyes checked said, Wow! You have really big pupils (so they were not dilating like normal- which I guess is why my eyes are so sensitive to light). And I have been a life-long insomniac. Had a sleep study done, but couldn't sleep. My total sleep for the night was 120 minutes (broken up into short segments- longest of which was 40 minutes) and I never did achieve deep sleep or REM sleep. The sleep doc told me to try to retrain myself by not going to bed until I thought I could sleep, and if I didn't fall asleep in 20 minutes to get up, if I feel asleep and woke up and couldn't go back to sleep to get up. But then get up at the same time the next day, NO caffeine, and no naps. Unfortunately, doing this really caused my other symptoms to flare (the headaches and severe nausea and weakness) and I simply couldn't do it.

All of these put together finally in August got me the diagnosis of autonomic dysfunction. The neurologist simply told me all we could do is treat the symptoms. For me that means knocking myself out with ativan and zofran if it is nausea, or giving myself a shot of toradol in my thigh (an ugly, painful shot) if it is the headache (since no other meds work for me, other than getting a shot of demeral or morphine, and the headaches often occur when the clinic is closed, nearest other med care is two hours away, I have been trained to self-administer toradol injections).

So now I have had one visit at Stanford with an autonomic specialist. I am scheduled for the tilt-table test and also a test where you blow in a tube. Had yet more tests (lyme's disease and more auto-immune testing).

Just wondering if anyone else had a life-time of symptoms but only recently diagnosed. And also -how do you live with this? I have been prescribed salt tablets and told to drink 2-3 liters of water a day. I have started taking 0.5 mg of ativan at night along with the low-dose desipramine and that seems to be helping me sleep enough to where in general I am feeling better. Still fatigued, but not debilitating fatigue like it was earlier in the year.

I have EXTREMELY flexible joints and wonder if this is something I should mention to the neurologist?

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Glad you found us. To answer the question of lifetime of symptoms... I can't say a lifetime, but a very longtime. My symptoms sounded like yours... Here and there until I had all the symptoms fall of 2013. I'm so glad you are seeing a specialist. I'm looking forward to seeing mine again. I started journaling and grabbed copies of my need recs. Every little bit of info helps. Now that you have a diagnosis... Just know it's only "up" from here... Sending positive thoughts your way.

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Hello Circuscat, first and formost welcome to the forums, I think you will find that everyone here has spent at least some amount of time going from one doctor to another trying to find answers to no avail, and recieving many alternate diagnosises. For me personally it took about 5 years before my doctors diagnosed me with POTS. Fluid and salt loading is always a good start, my cardiologist told me to drink a liter of water when I wake up in the morning, pointing out that loading yourself with water like this is different than just drinking seperated glasses throughout the day. I also add salt to my water, though I know they make salt pills, or some people eat a lot of chips for the salt content, or my cardialogist recomeneded even drinking pickle juice because of the high salt content. Wearing compression stockigns can also help, do you find that your nausea is due to changes in body position? I know I will start getting nausea if I am up for too long, compression stockings sometimes help this. Have you had a tilt table test done? Or been tested for ehlers danlos? one symptom of theirs is the extremely flexible joints you mentioned. Also are your headaches related to change in position? many of us have migraine, but others have orthostatic type of headaches, or head pain.

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Hi circuscat,

Welcome to the forum! I'm not feeling too well just now, so I'll be brief. A few things you mentioned make me think you should be checked out by a doctor familiar with diagnosing Ehlers Danlos Syndrome ( EDS ). If you would like to learn about EDS, there is a site, www.ednf.org, and they also have a Forum called Inspire. The site gives a good explanation of the types of EDS and how each is diagnosed. EDS and POTS and/or some form of dysautonomia are often found together. It is also common to find EDS in people with autoimmune issues. A geneticist or,occasionally, a rheumatologist is your best bet for finding a doc that is educated about EDS.

I'll try to write more later.

Katie

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Hi circuscat,

I agree with katybug,i have similar story to yours that's why I spend some of my time on a Inspire forum.I at 50 got my diagnosis of HEDS which is elhers danlos III. Dr Blair Grubb Finally diagnosed my condition behind my pots and dsyautonomia.Vanderbilt university in

nashville Tenn,in 2007 diagnosed my pots and dsyautonomia.Dr Grubb in Toledo Ohio in 2014 diagnosed my heds.Because i do suffer with pots and dsyautonomia i love my dinet.org forum,its very informative. But because i also suffer with heds i find inspire informative for that.much prayers to you to find answers and support,you need.which ever forum or both will provide that:)

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Hi circuscat! Welcome to the forum. Crikey most of your symptoms are like mine even the eye issues. I have POTS/Autonomic dysfunction issues and this year got diagnosed with Ehlers-Danlos 3 or Hypermobility Syndrome, which is genetic; hence the loose joints and dislocations. The ME/POTS originally came on in 1984 after Glandular Fever. Within a year the IBS started. I know that EDS/POTS/ME/IBS and neuropathy are all linked. If you want to personal message me you are very welcome. I know how hard it is to face these horrible problems. That's gastroparesis which causes slow motility in the bowel as the nerves aren't working properly and the structure of the bowel is affected by faulty collagen which is EDS. I find this triggers my headaches and when my bowel is full I have extreme pain in my head and eyes. I use suppositories on a regular basis to ease the situation. I also have terrible nausea and sleep issues. Many people with autonomic dysfunction, POTS/EDS have these problems.

I am now gluten free to help with my gut problems. Gluten and dairy aren't good for the body. Gluten harms nerves and dairy causes inflammation. You have to stay rigidly on this diet for many months before you can see the benefits as gluten leaves inflammation for a long time and the body has to heal.

I hope you get some answers you need x

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Thank you, everyone, it is so great of all of you to answer!

I have an appointment for a tilt table test and the "blow into a tube" test (don't know what it's called) in early March.

Should I mention the extremely flexible joints to the neurologist who is doing that test? He is a specialist in autonomic dysfunction and sleep disorders. Even though it isn't really his field maybe he might know if I should go see someone else about that?

I guess one thing I find frustrating is the "Treat the Pieces of a Puzzle" approach by most doctors. I wish the GI who diagnosed the dysmotility had said- maybe you have autonomic dysfunction- or the neurologist who treated the headaches, the ENT who found the eustacian tube issues, the optometrist who found the eye problem, my own local family practice clinic who noticed the drop in blood pressure when I stood up while I was in being treated one of umpteem times for severe nausea/weakness/headache/dizziness.

It frustrates me that I am the one who finally said, when after feeling so awful for the past nine months was sent to a neurologist for the headache part- "I have all of these various things- do you think I could have autonomic dysfunction?" And now I feel the same way about the Ehlers-Danlos possibility- you would think since these conditions are often linked, SOMEONE along the line would have noticed how many times I have sprained my ankles and wrists because of my "loose ligaments" and put it together.

Honestly, this fall, after the first neurologist told me "all you can do is treat the symptoms" and had no input at all (I mean zero) about what autonomic dysfunction means or how to live with it, I THOUGHT I WAS LOOSING MY MIND. There were times I thought- okay, they should just lock me up in some padded room somewhere because "nothing" is wrong yet I feel so bad.

When I finally started feeling better, I would go on an upswing for a few days and think, "Well, whatever it is, it's finally over" and the BLAM- wake up extremely nauseated, or with a bad headache, or so fatigued it would take me 45 minutes to work up the energy to get up and get a drink of water.

Statesof - yes, if I sleep too long (or stay in bed too long, since often I am not actually sleeping, just trying to) then I will wake up with a headache that sometimes will go away after sitting up for a while. And when I have the nausea attacks, I have an overwhelming need to get horizontal. It's hard to explain, it isn't that I feel like I'm going to pass out if I don't lie down- more like I feel like I'm going to die (sorry, sounds overly-dramatic, but it is a really horrible feeling).

The hardest thing I think is dealing with the depression and frustration at having to postpone, cancel, or not make plans. I'm sure many of you can relate to that "But you look fine!" thing.

And I have been mostly gluten and absolutely dairy-free for over 30 years! That was one step in this journey- having a medically-supervised elimination diet that was very strict and that's how I discovered the gluten and dairy issues. I have been tested a million times for Celiac's, always test negative (but I don't eat gluten and I understand that that can result in false negative). I went to a Celiac specialist who felt that based on my CNS symptoms from eating wheat/gluten (I get very cranky, horrible headaches, and extremely constipated from anything with wheat in it) made me a candidate for at least getting the DNA testing. I did- and do have the DQ-8 gene that is associated with it. Next step is she wants me to do the Gold Standard testing- small bowel biopsy- but before I do I have to eat a minimum amount of wheat/gluten every day for six weeks. So far I have not wanted to deal with the headaches and constipation and grumpiness involved.

Thank you again for listening to me whine and moan! It feels good just to get the frustration off of my chest and know that there are other people out there who understand, because no one I know in Real Life really gets it. My husband has been very patient but I know he gets tired of a wife who doesn't feel good much of the time.

And thank you for all of the information and tips, I really appreciate it!

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wheni was diagnosed at MAYO with POTS/autonomia/tachycardia.. they told me basically they would just have to "bandaid" the symptoms as they came up..problem is we suffer from so many different symptoms and everyday is different that i only treat the symptoms if they are severe or i would go crazy deciding on what meds to take and what to do to help the symptoms each day..i rarely leave the house becasue if i think i am feeling ok and try to go to Walmart i find out in 10 minutes i cant stand any more and have to go home..so i never go anywhere by myself..it does get depressing you feel trapped i felt that way at first....and like you said for people to look at us they think we are ok..i have a handicap plac for my car and i rarely use it because of the looks i get when i get out of my car..but if they could trade me bodies for one day i know in about a hour they would be begging to switch back..you have to constantly be thinking about everything you do..the way you stand,lean.bend,sit,walk,turn,what your eating,drinking,just everything and the minute you let your guard down you fall over (that is me anyway) .. i think for doctors they are so overwhelmed due to lack of knowledge about this and there are so many varibles ..that finding the correct diagnosis for most of us may never come..i never make plans because as soon as it gets close i cancel them so i dont get to town to see my friends any more and really dont do much do to the uncertainty of how my day will go..plus i feel like i have to keep up and i over due and then i suffer worse for a few days..so i find it best to stay home where i am actually content i have to say..most people would not be..i guess it is less stress on me just to stay home ..i hope you find out what is going on and a GOOD doctor to follow your care..best wishes.. :)

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It certainly wouldn't hurt to mention the flexibility to the neuro. A friend told me once to tell "all" of my symptoms to every doctor that I go to and maybe one will be able to put it all together. I do feel your frustration of felling like each specialist is just looking at their part and not tying it all together. I went to my general practitioner and told her that, but she was no help :(

A cardiologist was my biggest help. You didn't mention if you have tachycardia and blood pressure issues (unless I missed it).

I still have symptoms and yes, they can only treat the symptoms--there is no cure unfortunately. I eventually gave up on trying to find a cause or reason for my dysautonomia. I spent almost two years, a lot of money in testing and 10 different doctors to just wind up on a beta blocker and midodrine. I don't have the GI issues like you though. I'm sure that is most miserable.

Best wishes to you and welcome to the forum!

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Thank you, everyone. Still trying to figure my way out around the forum. :) Is there any way to get email notifications of responses?

DKD - I actually have a slow heartrate- it is generally around 60 but can drop down to the 50s, or if I have been given pain meds to the 40s. My BP tends to run low also but will go up when I am in pain (for instance, with a bad headache). But my "high" blood pressure is actually good- just high for me. (for instance, 135/90 would be very high for me). My body temp is also low- generally in the 97s but not unusual to be in the 96s.

I will mention the flexibility to the neuro doc when he does the autonomic testing and show him the insane things I can do with my hands.

Corina- I notice you take octreotide injections- do you have GI dysmotility?

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Hi circuscat,

Regarding email notifications:

Click on the arrow next to your username in the top right corner of this page.

Then click on "My Settings."

This should take you to your settings page.

On the left there is a vertical tool bar. Click on "Notification Options."

This will take you to a screen where you can select various notifications to be delivered to you via email if you click in the email box for the various options.

If you need help with anything, please let me know.

Thanks,

Katie

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No not specifically. but Ido have a lot of abdominal pooling. The octreotide helps constrictng the blood vessels and really works for me. I now am on a subcutaneous regimen so need to adjust my signature!

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  • 1 month later...

Hi Circuscat,

I too am new to Pots, although I have had symptoms most of my life. I am also being worked up at Stanford and have a tilt table test in a few weeks, and I am turning 60 this year. I am new to this site as well, and find it to be a wonderful, supportive group with lots of knowledge and advice. It has been a depressing year for me. I was hospitalized for dehydration with cardiac changes a year ago. I have no cardiac disease, and was discharged without a diagnosis. After repeated trips to the ER for IV fluids, a Stanford doc discovered I have low aldosterone. Now they believe the underlying illness is Pots. I have had symptoms for years, but now I seem worse but after a year of suffering, I am frustrated that I seem to be only partially diagnosed. I do not have the abdominal problems that you suffer from, which sounds just awful. I seem to not be able to hold onto salt, and am constantly using the bathroom to urinate volumes of water and salt.

I hope that you can get better treatment so that you can resume a more normal life. I started to see a therapist who works with people with chronic illness, as I have been grieving the loss of my once active life before my hospitalization, and onset of symptoms I could no longer ignore. This has helped me cope, and now I wait for the tilt table and neuro workup. Good luck to you, and lets hope you feel better in the future!

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Hi Mare- where do you live? I'm in Mendocino County.

My Tilt Table Test was normal- or actually, BORDERLINE abnormal but nothing that he would treat or order further testing for. That was a little disappointing. My BP didn't fall below 115, which is HIGH for me. So I'm a bit confused at this point, seems like yet another instance of "I think you have ________; oh, wait a minute, no you don't". I do have other things like heat intolerance, the GI stuff I guess is considered part of autonomic dysfunction, eustacian tube that doesn't respond, extreme light sensitivity. Plus if I stand up quickly I have to grab something and put my head down or I will pass out. None of that seemed to show up on the TTT. I said it was like when your car makes funny noises and you finally take it in to the shop, where the mechanic starts it up and it runs perfectly!

However my symptoms, my extreme flexibility, and family history (mom died of dissecting aorta) are sending me to the Marfan's Clinic to be evaluated for Ehlers-Danlos. He said that if I have it it can explain my autonomic symptoms. That's in two weeks and I'm not sure how I feel about it. I'm hoping to FINALLY have an explanation for all of these things I've dealt with forever, that always end up being idiopathic and primary (meaning, we don't know why and can't do anything to help you), but I'm so used to the "further testing reveals nothing".

Seeing a therapist is a great idea. I did that after I got the diagnosis of GI dysmotility- same thing- incurable and not a whole lot of treatment. So I did a ton of research about diet, meds, lifestyle, etc. Figured out what I needed to do to feel my best, then went to a really good hypnotherapist and said, "I know what I need to do, I want to put this all in the back of my head so I do it without thinking". I was tired of feeling like a sick person because I was thinking about my guts 24/7. It was really, really helpful and let me move on with my life and concentrate on what I CAN do, not obsess about what I can't. I think therapy should be a part of every treatment plan for chronic illness.

Who are you seeing at Stanford? I saw Dr. Mitchell Gordon Miglis, and liked him a lot. He is very nice, thorough, communicates well, and is empathetic. Good luck and keep me posted!

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Thank you Circuscat. That is a very smart idea about having hypnosis to help you make changes. I never thought about hypnosis in that way. I am trying not to be obsessive about my illness, but its pretty difficult not to obsess when it is so unpredictable and requires adjustments all the time. Listen to your body, as my doctors say, but don't obsess about it! I live in the south bay, just a few miles from Stanford. I think that I will be seeing Dr Miglis. Good to know what you think of him. I am also seeing Dr. Friday in cardiology. She is an expert in Pots as well. My endo doc originally sent me to her, but it was taking too long to get an appointment so I am being seen by neurology after my test.

That is interesting about your tilt test being borderline. I am worried mine won't show much. My symptoms wax and wane, and being on the fludro will affect it, even if I skip a dose. Part of me wants the test to show nothing, the thought being that I don't have an autonomic problem, or they will tell me that. I have terrible heat intolerance, flushing, fatigue, all the dehydration issues, brain fog, low B12, and much more. Thankfully I do not have the abdominal issues as they sound just awful. I have suffered from insomnia as well, and think it is a contributing factor. My brother was worked up for Marfans, but although he has some features of marfans, he has tachycardia caused by an extra sinus node. Is the Marfans clinic at Stanford?

Good luck to you! I hope they offer new insight and treatments at the clinic

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Hi Mare- I was hoping you were north bay so we could at least meet for coffee!

I have all the stuff you mentioned too. And I know what you mean- you don't want to have anything, at the same time if you are honest with yourself you know that something isn't right. I also have flares where I honestly feel like I can't go on living like this, and then times where other than being tired, I feel normal. During those "normal" times it's easy for me to talk myself into all of it being a mistake, or not happening, etc. Then BLAM!!!!! I get flattened out of the blue and then I remember, oh yeah- this thing.....

The Marfan's Clinic is at Stanford. He said he normally sends EDS people to UCSF but felt I could get in faster in the Marfan's Clinic and they do at least treat the worst of the ED Syndromes- the one I really don't want to have (the vascular type). But my mom died from a dissecting aorta, so that history I think is why I'm being seen. All of my male relatives are really tall- anywhere from 6'3" to 6'7"- so a Marfan's Clinic isn't actually a bad start.

Mainly I'm afraid of yet another "we can't find anything, so go home" diagnosis. soooooooo tired of it. I am doing salt and 2+ liters of water every day and I do think it's helping.

Good luck and please keep me posted on how it goes, and if you like Dr. Miglis. :)

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  • 3 weeks later...

Hi Circuscat. I just saw Dr Friday at Stanford. She was great and spent about 90 minutes with me I officially have Pots, as my body passed ( or flunked depending on how you see it) the poor mans tilt. Real tilt test in a week. She was very knowledgable and gave great guidance. It took 3 months to get an appointment with her. I sent you a message, not sure if you got it. Let me know when your down here please!

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CircusCat - yes, I can "relate" to your situation. I am in my late sixties, have had symptoms since my teens, and only began getting diagnoses a few years ago. I live in the SF Bay area and went to Mayo Clinic in Scottsdale, where they began to make connections. Compounding things is that I have multiple problems including a congenital Cerebral Cavernous Malformation that causes seizures, migraines, and contributes to my dysautonomia because of where it is located. I also have sleep apnea, labile hypertension - the list goes on. One of the most confusing things is my diagnosis of idiopathic edema, which limits my intake of liquids.

I have done follow-up at Stanford for several years. The Autonomic Clinic is good, if you see the 'real' doctors. The director of the clinic did my testing and gave me the diagnosis of primary dysautonomia. He's a good guy. But even he is confounded by the constellation of all my symptoms and diagnoses.

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