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Orthostatic Hypotension, Long Story Of Where I Am Now


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Hi everyone. I recently joined and have been lurking for several months. I have tried to contribute whenever I can to help others, but I still am not sure where I fit in. My husband, who is the most wonderful and supportive man I have ever known, suggested I write in to see if anyone could help us decide where to go next.

I have been sick for several years now, gradually progressing to my current state of disability. The first symptoms were vertigo and acting out my dreams, which began about 2007. I would cry and scream out in the middle of the night and my hubby would have to wake me up from these violently vivid dreams. I was on no medications when this started and have never taken any illegal drugs and never been a heavy drinker. Slowly, I started to get fatigued, where I would have trouble walking to get the mail. I also began feeling lightheaded when I would stand up. Then, I started having constipation, with bleeding and intermittent bouts of diarrhea(sorry for the TMI). I was diagnosed with fissures, gastritis and IBS.

FYI, I have a history of PTSD, including childhood abuse which went on for years, witnessing several deaths(as a police officer and one car accident) and then in April 2010, I was in a minor boat explosion on a friend's boat. I received the "blow" of the explosion. Immediately, I started having migraine headaches. The migraines worsened in June so I went to the doctor who tried numerous meds, none of which stopped the headaches. I had MRI/CT scan which came out mostly normal.

I went to a new doctor who diagnosed me with Fibromyalgia and put me on Cymbalta. The headaches got worse and I started tingling, losing my balance when I was trying to exercise, light walking and aquatic therapy. I could barely get out of the pool at times. My neuro, in February 2011, noticed the loss of balance, tremors and leaning when he evaluated me. The pain in my shoulders and neck was often intolerable and I had a couple of episodes of bowel incontinence(TMI again). I started to worry about MS and neuro did MRI of my head, neck and lower spine, which came back normal.

In February of 2012, the dizziness, vertigo and high blood pressure started. I was extremely exhausted all the time and the REM Sleep Disorder Behavior was happening more frequently. At night I was close to passing out and when I would take my bp it was 60/40 at times. My doctor suspected POTS and dysautonomia and referred me to a cardiologist. He did EKG (normal), Echo (confirmed mild MVP), 24 hr halter(confirmed low bp at night, high bp during day)and chem stress test(normal). He was concerned about hypertension, it was 180/110, but he was afraid to treat it because of the nocturnal drops. This continued for several months. He finally tried on Midodrine at night, and after several changes to the dose and times taken, it never raised bp so it was discontinued.

In March, April of 2012, my digestive issues started. I began to get full easily and was severely bloated and nauseous. If I ate too much, I would vomit. My hubby and I went on a gluten free, juicing, whole foods diet and I got sicker. I couldn't hold anything down and lost 15 lbs from July to August. I went back to gastroenterologist who has done several tests: barium swallow X ray (reflux), gastric emptying (normal), endoscopy/sigmoidoscopy (dilation of esophagus, fissures, internal hemorrhoids). During this time, I still cannot eat anything, I choke on my own breath and liquids, whatever I do eat and my pills feel stuck in my throat and my diet consists of Glucerna shakes, toasts, applesauce and a few other small amounts of food, which make me extremely nauseous and vomit.

Over the last several months, I have noticed that my drops in orthostatic blood pressure have been more frequent and severe. My systolic blood pressure will drop 25-30+ mmHg upon standing within three minutes and it usually stays low for 15 minutes or so. My diastolic will sometimes from 10-15 points. My heartrate always is 30+ upon standing.

I am being seen at a dysautonomia clinic here in Birmingham and my doctor is wonderful. We are treating the POTS with beta blocker(metapropol) and since it was further dropping my lying bp, she added 0.1 mg of Florinef. All of this has so far helped my hypertension, and has lowered my heartrate to 55-60 when lying down, but I still have the POTS and othostatic hypotension and all the symptoms.

In addition, my balance has gotten worse and I have fallen several times. I also have started to drop things as soon as I pick them up. I'm very clumsy, my blurry vision has worsened and my body temperature flunctuates wildly (94-99.5). My hands and feet are freezing cold. I have severe lower back pain, coat hanger pain and stiffness. Sometimes my posture is stooped and I shuffle when I walk.

I am terribly sorry for the length of all of this, but I could go on and on I have so many problems. Several things have been ruled out: celiac, Lyme disease, Addison's and other endocrine issues, pheochromocytoma, cardiac issues, paraneoplastic, Myasthenia Gravis, several autoimmune causes.

I guess my worry is that I have some sort of autonomic failure. No one in my family has dysautonomia that I know of, but I do have family history of Parkinson's and dementia. I am only 42 years of age and the doctors are having a hard time believing it is Parkinson's, MSA, PAF or Lewy Body Dementia, although I feel it is a scary possiblity. If there is anyone that can help guide me in the right direction, I would truly appreciate any assistance. Thanks again so much for taking your time to read my story.

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Talk to your doctor about how to proceed,

I'm at a a loss with all of those symptoms, certainly there is something going on with your autonomic nervous system. In relation to MSA, there would typically be signs noted on the brain MRI such as hot cross buns sign or other features which you did not describe. One thing that comes to mind would be an atypical presentation of multiple sclerosis, but I hesitate about that especially if there hasn't been characteristic WM hyperintensities on brain/spine MRI.

If you haven't already, you might want to consider asking your doctor for a referral to a tertiary clinic such as the Mayo clinic to help with diagnosis and potential treatment options.

I wish you well on this journey and sorry that you have to go through this, you must be incredibly strong to suffer so much without any answers and still fight on.

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Thanks for your feedback, jangle. I know when they did the last MRI in Sept 2011, they were looking specifically for MS lesions. Not sure of the radiologist or my neuro's familiarity with MSA or the hot cross bun sign. I had a close friend that had an episode at home, her doc did an MRI, said it was normal. She decided to change doctors, new doctor looked at MRI and found that she had a mild stroke.

My dysautonomia doctor has mentioned Vanderbilt as a possibility. It may be time to actually make the call.

We all suffer in different ways. I try to just take it one minute at a time, because I never know what's lurking around the corner. All we can do is live our lives and try to enjoy as much time as possible.

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So sorry to hear that you are struggling so much with all these miserable symptoms Susan! A very long struggle it sounds like. Kudos to you for keeping up the search for answers.

Just as another thing to consider, have you ever looked into post-whiplash syndrome? It has a lot of the same autonomic type symptoms but might account for some of your symptom onset that occurred after your car accident and boat explosion experience. I think there is a doctor in Colorado who has written some books/articles on it and "kindling theory". Wish I could remember his name. (Stupid brain fog! Ugh!) Might be another thing to look into to see if there is anything there that might be helpful for you. I have a friend who had something like this after falling out of a tree and sustaining a lot of injuries and has had some significant help with some pretty sophisticated types of manual therapy. Don't know that it would solve all your problems, but if it could relieve at least some of your symptoms that would be beneficial I would think?

Vanderbilt might be a good option also to do the full on autonomic testing to see what shows up there. Looks like you're already on or have tried a lot of the meds typically used to ANS issues though?

Sure hope you can find some answers soon. As your friend found, a lot of time what is seen on the imaging studies frequently depends on the person reading them- unfortunately.

Hugs!

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Chaos, thanks so much for the suggestion of post whiplash. I have read a little into this. My neuro seems to think that both of my incidents were not significant enough to cause these symptoms of Dysautonomia. In the car accident, I did not have any impact, it was severe emotional trauma as I almost got in between another car hitting the back of a pickup truck. I felt extremely guilty because I had slid on black ice and went off the road into a ditch. The pickup truck stopped to help me and as I was walking up to them another car came speeding off the black ice and hit them. That person was killed. This occurred in 1998.

My symptoms started in 2006 or so with the vertigo and REM Sleep Behavior disorder. Then the explosion was in 2010. My other symptoms have gradually onset over the last 3 years.

I will look up "kindling theory" and see if I can make any sense of it with what all has happened to me. I definitely don't think all the stress has been helpful, that's for sure!!

Thanks again and take care of yourself.

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Guest Alex

Susan,

that's quite a lot to deal with, but you definitely have the right attitude if I may say so. Kudos to you for that!

Not sure what to make of your symptoms, or what avenues may be worth pursuing for you...sorry, but I want to let you know that you'll find lots of support here- I know I did.

Chaos, is the dr you're mentioning dr Robert Scaer? If so his website is www.traumasoma.com

Susan, whatever your next steps towards being dx or treated may be, please keep us posted.

Best of luck and stay strong.

Hugs,

Alex

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Joann and Alex,

Thanks so much for your kind words. I don't always have a great attitude. There are days when I just want to crawl in a hole. But I realize it could be a lot worse. Hopefully we can all find the answers we need to find relief one day.

Thanks for the support. It means a lot. Take care of yourselves.

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Susanhs, just wondering if you have had all of your vitamin levels checked? Dr. Goodman at Mayo just found me to have a severe B12 deficiency and after doing a lot of research I've found it can be responsible for a ton of bad symptoms. Dr. G. and I agree that it's not my main issue, but it's contributing to the problem. I've been on the vitamin for three weeks and last night I carried my toddler up the stairs. My heart was still racing but I didn't black out and there was no shortness of breath! I know we're all different, but it's an easy test and might be worth checking into! I hope you find answers and relief soon!

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Aimes,

Yes, I have been checked for vitamins, including B12, B6,potassium, etc. The only thing off was my B6 was high. None of the doctors could explain why this was happening. After thoroughly researching the internet, I found that you can only get high B6 if you take a lot of B6 for a long period of time. I was only taking a multivitamin with a small amount of B6, so there was really no good explanation for it. The only thing I can figure out, and it's just a guess, is that something was happening during my digestive process and it was not breaking down the B6. Oh the wonderful mysteries of Dysautonomia!!

Thanks for the suggestion and I will keep it in mind when I do more bloodwork I may go ahead and ask for another thorough testing of all of these levels. I'll keep you updated! Take care and gentle hugs!

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Still on the B12 bandwagon, I know Dr. Klimas/Dr Rey (ME/CFS specialists/researchers) have cited that a B12 level under 400 can cause neuro type symptoms even though a lot of lab reference ranges have levels as low as 180 being "normal".

Alex- THANKS! Yes, that's who I was thinking of. Read his book, The Body Bears the Burden which I thought was really interesting, especially regarding how many of the symptoms paralleled dysautonomia symptoms. With his background as a neurologist it was an interesting take on that field of medicine. Peter Levine also has done a lot of work on healing trauma in the body.

Susan- Ironically, it seems a lot of the time the people with the most severe post-whiplash syndrome actually have some very minimal impact situations as far as the actual incident that triggered their symptoms. Doesn't sound like your situation fits with this at all though. Just thought I'd throw that out there for general knowledge though.

Do you remember if any of your symptoms started after any type of an infection/cold/flu/ anesthesia/dental procedure etc?

Have you looked into ME/CFS? It has a lot of overlap with FM. You seem to have done a lot of research already but in case you haven't seen them here is a link to the 2011 International Consensus Criteria for Myalgic Encephalomyelitis. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

Some people get it as a post-viral onset, but there are people for whom it has a gradual onset as well.

Hugs!

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So sorry to see you are having to deal with so many issues, our geneticist, got to the point that he wanted to rule out Adrenoleukodystrophy (ALD) given my children's issues and family history of dementia and Parkinson's. We are still waiting for blood tests to come back!!

It must be so scary with Dr.'s not being able to come up with answers, it is such a pain when we have to become medical detectives. As vertigo was your first symptom have tick borne conditions been ruled out?!

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Chaos, I did some research on the kindling theory and whiplash syndrome and it was extremely mind opening. I do believe that I have delayed onset PTSD (from childhood abuse-was abused by uncle for many years and was around him for another 10 years before I finally told anyone). I dealt with the abuse by disassociation and academic/school activities. Then, with the additional traumas, they kind of piled onto it. My doctor has been thorough in checking for "obvious" things. So, he has ruled out ME/CFS, Hep C. I don't recall any virus before the symptoms started. I never used to get sick, that's the irony of it all. Since the onset, I have had so many colds, flus, infections, allergic reactions(minor).

Anna - seeing a geneticist is a good idea. I may talk to my neuro about this whenever I hear from him (left him a message last week). I really want him to send me to a Movement Disorder Specialist, who may know a little about Atypical presentations of Parkinson's, dementia, MS or MSA. Unfortunately, I have been thoroughly checked out for Lyme and all tests were normal. At least if it were Lyme, I could try the treatment protocol and hopefully have gotten some relief.

There was another couple of incidents that I forget about but the vertigo still began before either one occurred. One time I hit my head hard on a steel beam in our garage. I would say I didn't pass out, but I was "stunned". The other was a stupid drinking episode in New Orleans with my husband. We were going to have a drink or two then go to bed (we are not partiers). However, the people next to us were doing vodka shots and invited us to join them. I don't know how many I ended up having. I never do shots of any kind. I don't know how we made it to the hotel, but I remember waking up with my husband dousing me with water and there was this bright light behind him. The next morning I was still vomiting and when I went to the bathroom there was blood on the walls from where I had thrown up so much I was bleeding. I couldn't even look in the mirror my eyes were crossed. I couldn't eat anything and stayed in bed all weekend sick. My husband says now he should have called 911. He had never seen me like this. I get so embarrassed when I tell this story. It was really stupid. So, I'm sure I had alcohol poisoning.

I also went to the eye doctor for my yearly check up. The blurriness has gotten worse and last year I had a slightly abnormal field vision test. This year, he said that my test was poor. He says there must be a neurological cause to this. He mentioned my reaction time to seeing the spots in the periphery and even the center spot was very slow, so that is why he suspects that it is neurological. I definitely react to things slowly, run into walls, drop things and now I'm leaning when I walk.

Sorry to add to the mix. It's hard for me to remember things. By the way, Social Security Disability denied me so now my attorney is appealing. The attorney thinks it's because my level of education is so high that I could find something to do ( I have MSW and JD, practiced law for about 7 years before I couldn't do it anymore). I guess they don't care about the liability I would be in giving anyone legal advice!!

Thanks everyone again for all of the support. It helps to know that I am not alone in this. Take care and gentle hugs to everyone!

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Sure sounds neurological. So frustrating that they aren't finding anything yet. Hopefully you can get into Vanderbilt and be seen by their neurologists as well? Or Mayo Jacksonville? I remember we had another member on here a few years ago who was having really odd symptoms and was diagnosed with "stiff person syndrome" by Mayo Jacksonville. She was doing well last we heard, once she got the right diagnosis but she went thru **** trying to find a diagnosis.

Hugs!

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I have a lot of the same symptoms and I am only 25 : ( You have more severe symptoms though. I have been sick for a year. I also have ptsd and childhood abuse. I talked to other woman with msa (not to worry you) with the same abuse. The doctor I will see in June actually did a study on the link between abuse and neuro diseases. I have eye issues too if you want to read my post. I hope you get an answer soon! The not knowing eats away at my heart everyday. You been to mayo ?

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Chaos & Agreeky, sorry about not posting sooner; I just noticed there was a second page, duh!

Chaos- I too have felt for awhile it's neurolgical. My neuro sent some blood work to Mayo. They were able to rule out stiff person syndrome, Lambert Eaton, Myasthenia Gravis and autoimmune neuropathy, as well as some paraneoplastic syndromes. I do have a lot of those same symptoms though. Glad she was able to get a diagnosis finally.

Agreeky, I have also seen a connection between women with MSA and PTSD. Please let me know how your appointment goes with your neuro. My primary care doctor feels there is a definite link between my dysautonomia and the PTSD. Good luck in June. Hope you can find some answers and relief. It's not right being that young and being sick.

Gentle hugs to you both.

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i was dx'd with ptsd too and was told that is what triggered my pots and also was abused as a child. I also suffered whiplash not sure how that has to do with it but my pots kicked in within 1 month later I would say. my vitamin b levels were off the roof according to my doctor, he said not to take vitamin b supplements anymore as too high vitamin b levels are now being linked to cause cancer.

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Sorry everybody for not responding sooner. I have been suffering with headaches, dizziness and all the other good stuff the past couple of days.

Angela, I have never heard about the connection between high vitamin B levels and cancer. Was the doctor able to tell you about why all your levels were so high? I have not had my B6 or B12 checked for awhile. I should mention this to the doctor just to see if my stopping the multivitamin actually returned my B 6 back to normal.

Agreeky, I think your doctor has to specifically order the tests. My neuro suspected low B6 levels so when it was high he didn't know what to say except stop the vitamins immediately.

My GI did several biopsies and more extensive blood tests for celiac, eosophilia, H Pylori and cancers. Everything was normal, of course. One day, maybe we'll figure this all out.

Thanks for all the feedback. I really appreciate your taking your time to try to help me. Now, if I can just get my neuro's nurse to call me back :(

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