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Dysautonomia? Part 1

There is far too much information to fit it all into one post. Therefore, I have split it up into several parts to make a series.

Starting with the present:

I do not have an official diagnosis for the collection of symptoms that have affected me in the last few weeks (symptoms which I do not attribute to any of the many chronic conditions with which I have already been diagnosed). My doctors seem reluctant to pinpoint a name at this point in time.

Calendar_sxu.hu_1072482_calendar

Frankly, I’m less concerned with what it’s called than dealing with the symptoms themselves. So if my doctors can help me to feel better without getting into a name game, I’m content. I have enough diagnoses on my head. I’m not too fixated on obtaining another label to add to the list. As long as I’m getting better… I am not going to fret over the name.

In the interest of writing about my experiences though, I’m going to relate what I have learned in the last few weeks because I have encountered a striking number of people who have had similar experiences or who have loved ones who have. Not only would I like to explain what’s been happening to me lately (which some of you know from twitter or email messages exchanged) but I hope that sharing my experiences might help someone else who winds up reading this.

HOUSE_MD

Six weeks ago:

So, let me start at the beginning. About six weeks ago, a troublesome set of symptoms began to emerge for me. The one that grabbed my attention the most was that I suddenly felt faint, to some degree, all day every day… with numerous near-misses throughout each day. Literally, one day this just became a huge problem. It was quite sudden. I blogged about how I was feeling near the beginning of these symptoms starting up here: Fun For Healing UPDATED. I also referenced it here: Paging Dr. House.

Suddenly there were too many times to count each day that I grabbed onto chairs, walls, or whatever I could get my hands on to avoid hitting the floor. I have my share of experience with fainting over the years and there was no doubt that this is what was happening… (i.e. close calls for unwanted meetings between me and the floor)! I managed to squeak by without actually fainting by paying close attention to my symptoms/reacting quickly and simply being fortunate.

In addition to all the near-misses with fainting, I felt dizzy, lightheaded, weak, and nauseous. I also had extreme fatigue set in. I am no stranger to fatigue between my fibromyalgia, obstructive sleep apnea, and endometriosis in particular. This was different. This fatigue hit me very suddenly and at the same time as other symptoms. In the first 3 weeks or so, I had a brutal headache in the front lobe of my head. It was intense! Then there were times when I woke up in the morning that I was physically unable to get out of bed. I was too weak and tired to move. It was scary.

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While my heat intolerance (see Endochick’s post on heat intolerance and my comment to it HERE) certainly didn’t do me any favors and while it’s not unusual for me to faint each summer now (at some point) from the heat, this particular summer has been cooler than usual overall and these symptoms were happening on days that simply weren’t hot enough to explain my feeling faint.

After paying close attention to my symptoms and concluding that they were not stemming from various conditions I have already been diagnosed with, I started to ponder what else could explain these symptoms. The dizziness alone came in several forms: full-body dizziness where I felt like I was going to keel over, dizziness that caused me to actually lose my balance when I performed such taxing/daring operations as, well, walking, and the lovely dizziness inside my head where it felt like my head was spinning… among others. (The spinning head dizziness strongly reminded me, unpleasantly, of what it felt like for me to drink alcoholic beverages… a dizzy-headed feeling I detest). Basically, I felt like I was drunk… no small feat for a person who doesn’t drink.

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I went over various theories trying to figure out what was going on. Could my blood sugar be off? (My mother has diabetes). No, she let me use her meter when I was at her house and my blood sugar was ideal. Had I been exposed to something that triggered my multiple chemical sensitivity? (Chemical exposures have certainly resulted in me fainting in the past). No, I couldn’t think of anything.

What happened next? Stay tuned. This post will be the first in a multi-part series and there is much more information to come.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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40 comments

1 AmandaNo Gravatar { 08.05.09 at 4:27 am }

Oh Jeanne, I have been thinking of you and am keeping you in my thoughts… I do hope the doctors manage to help treat the symptoms soon. It all sounds terrifying and I am sending you all my love x
.-= Amanda´s last blog ..Happy Lughnasadh =-.

2 JeanneNo Gravatar { 08.05.09 at 8:58 am }

Amanda,

Thank you. It has been interesting to say the least. I really feel for people who have these symptoms all the time! I still have symptoms… but not like before. I am hoping that writing about my experiences might help others. Thinking of you too. xo

Jeanne

3 Twitted by Endochick { 08.05.09 at 10:11 am }

[...] This post was Twitted by Endochick [...]

4 JeanneNo Gravatar { 08.05.09 at 10:19 am }

Endochick,

Thank you for tweeting about this post!!

Jeanne

5 EndochickNo Gravatar { 08.05.09 at 11:51 am }

Dysautonomia has plagued my life since I was 15. It’s one hell of a roller coaster and you wonder when does this ride stop! My particular dysautonomia is referred to as Mitral Valve Prolapse Dysautonomia and was caused by undo strain being placed on my heart. At the age of 15 we were not sure why it presented as I was at ideal weight, ideal physical condition, everything was normal. I was given medicine to try that didn’t help and was eventually prescribed a regimen of water to drink and two cups of caffeine coffee to drink every morning. To a 15 year-old, this was music to my ears. I didn’t have too many problems with my MVPD after that – the occasional fainting spell when I exerted myself, I got dizzy easily, but nothing major like passing out from merely standing up that had led me to my diagnosis. Then, when I got pregnant with my son I passed out a couple times. They said it was normal and I agreed. He ended up being delivered 2 weeks premature because I had hypertension. But when I had my daughter, well, all hell broke lose. I could barely stand up, was passing out all the time, my heart was racing.. sound familiar? I demanded to see a cardiologist. It was my MVPD.

I am sure it was my MVPD that caused me to have those mini-seizure episodes last summer and keep passing out, as well.

The worst part of this disease is that most doctors don’t understand it. They don’t know it well enough to diagnose it, and if they can’t diagnose it then they can’t treat it. And then ones who are clueless look at you like a hypochondriac. And you go from one doctor to another doctor feeling as if you are dying because every time you stand up your blood pressure drops. Rarely do you get an answer and eventually you just give up and resign yourself to feeling… different.
.-= Endochick´s last blog ..Just a post =-.

6 Dysautonomia? Part 2 — ChronicHealing.com { 08.05.09 at 2:29 pm }

[...] you haven’t yet read my previous post Dysautonomia? Part 1, please do so because this post won’t make much sense if you haven’t read that one [...]

7 JeanneNo Gravatar { 08.05.09 at 5:20 pm }

Endochick,

Wow… I didn’t know you’d had it that long. It’s interesting to me the numerous types of dysautonomia there are. It seems that the criteria used for classifying a given case isn’t entirely clear. There also seems to be conflicting information. (More on that in a minute. It pertains to caffeine). Sorry to hear about the difficulties you had while pregnant with your daughter. Yes, it sounds familiar. It’s good that you advocated for yourself and saw a cardiologist to verify what was happening rather than have other doctors engage in guesswork!

A few years back I was told I had mitral valve prolapse. (There are studies that tie MVP with endometriosis… as a possible co-existing illness). Anyway, I later went to another doctor and they didn’t hear MVP. At first, I thought this was a matter of which doctor was doing the listening. However, I then had the same doctor hear MVP at times and not hear it at others. This baffled me since I thought that was something you either had or didn’t. Then this same thing happened with a heart murmur that comes and goes. I thought it odd that either would come and go. That’s what happened, though.

Closer to two years ago, I had been referred to a cardiologist after having dizziness, shortness of breath, and chest pains. I had been through the EKGs and Holter monitor by this point. My primary care physician referred me to a cardiologist and I had an echocardiogram-stress test. I basically failed it… mainly due to very high lung pressure. So the cardiologist now referred me to a pulmonary specialist from the critical care unit of a large teaching hospital. I was being evaluated for possible pulmonary hypertension (PT). PT is when the pressure in the lungs is too high and it can be fatal in some cases. Needless to say I was on edge for the two months it took me to be seen by him but there was no cancellation list because everyone waiting to see him was as anxious to do so as I was. I finally saw the pulmonary specialist. He was very thorough. He looked at my medical history paperwork (which was quite lengthy) and listened to me carefully. He also quizzed my husband about what I do when I sleep. He then announced that he didn’t think I had pulmonary hypertension at all but suspected I had sleep apnea. So he referred me to the sleep disorder clinic and… he was right! I have obstructive sleep apnea. Apparently, it can cause strange lung pressure readings. So he ordered CPAP treatment for my sleep apnea. (I later had another echocardiogram-stress test. It wasn’t perfect – the amount of time I could tolerate the treadmill was far lower than they like to see for my age, for example – but it was better than the first one).

Anyway, the cardiologist said I have “valve insufficiency” but that he wasn’t super-concerned about it. I guess he could hear about a 2 out of 6 with 6 being the worst. Apparently the valve insufficiency goes hand in hand with MVP and heart murmur (based on a recent conversation I had with my PCP). All I know is I used to have to pre-medicate for dental appointments but I no longer do. I guess they changed the criteria for that.

In any event, I was told in the last few weeks by both my PCP and my cardiologist NOT to have caffeine. They both went out of their way to tell me this. So I find it interesting that you were told to have caffeine. Things that make you go, “hmm”…

As far as the episodes you had last summer, I didn’t start blogging until June 2008. So I was out of the loop for the blog posts you wrote about this stuff. I had actually come across them while putting this series of posts together. What do you mean mini-seizure? I thought you fainted. My husband has had mini-seizures and he never faints with them. So I’m curious. He had been misdiagnosed as having TIAs (mini-strokes) when actually he started having mini-seizures in high school. The neurologist he saw a few years back told him it was mini-seizures he’d been having… not mini-strokes.

My PCP (at a recent visit) thought my cardiologist would order a test that he didn’t end up ordering (more details in a post later in the series). I have no problem with skipping the test. I’m just hoping that doing so isn’t going to result in preventable symptoms. However, I can see the cardiologist’s reasoning in how he proceeded. So, I’m going to give his way a chance. If he doesn’t get to the bottom of it, I am thankful that @POTSawareness (from twitter) gave me a list of doctors well-versed in POTS. One of them is about an hour away from here (in the opposite direction from my current cardiologist). My PCP thought the test would be ordered to rule out POTS (postural orthostatic tachycardia syndrome). Time will tell how this plays out. I’m going to give my cardiologist a chance. It’s good to know I have the name of another doctor in the event I should need it.

I try not to self-diagnose but can’t help but thinking that the POTS form of dysautonomia may be what I have. I asked my PCP about it and apparently the same causal factors behind POTS are behind neuropathy. As I have neuropathy and since the POTS symptoms are a perfect match to what I have been having, I wouldn’t be surprised if that’s what I have. She acknowledged the possibility but didn’t seem to want to label it. I think she was deferring to the cardiologist. He didn’t get into names. So, we’ll see!

I’m sorry you have been dealing with this for so long!!

Jeanne

8 TerriNo Gravatar { 08.05.09 at 10:32 pm }

What a great description of dysautonomia and POTS! I was just diagnosed a couple weeks ago (I also have chronic fatigue and immune dysfunction syndrome). I’m looking forward to reading Part III!
.-= Terri´s last blog ..Rambles =-.

9 EndochickNo Gravatar { 08.05.09 at 10:37 pm }

The caffeine – I was told, at the time, to drink two cups of coffee upon waking up and that was the only amount of caffeine I was allowed. This was meant to act as a jumpstart for my blood pressure because I couldn’t tolerate the medicine they had me on that did the same thing.

The Mini-Seizures – Last summer I was having terrible dysautonomia spells, became literally house bound. Was laid off of work on medical leave all summer because of it. It became so taxing on my nervous system that it messed with my migraines to the point that I was experiencing what my neurologist termed mini-seizures (these occur like the absence seizures commonly found in children). I haven’t had one in well over 6 months, but the smoke smell I began smelling with these episodes still lingers on occasion.
.-= Endochick´s last blog ..Just a post =-.

10 JeanneNo Gravatar { 08.05.09 at 11:53 pm }

Terri,

Welcome to my blog! Thank you very much! :)

I just took a quick peek at your blog and look forward to taking a closer look at it. I had read somewhere that some believe that the Postural Orthostatic Tachycardia Syndrome (POTS) form of dysautonomia is somehow linked to ME/CFS. I guess there is some controversy about whether they are considered to be related.

Anyway, I’m happy that you found my blog and I’m looking forward to checking yours out more. I saw something on your blog about wanting to connect with ME/CFS patients. You were talking about Facebook and I do have some contacts on there who have ME/CFS but I am used to connecting with them more on twitter. ME/CFS patients are very active on twitter! They had a tweet contest in May for ME/CFS awareness month and I won 3rd place (for the 3rd most tweets of everyone who tweeted and retweeted about ME/CFS). Anyway, if you click on my Facebook icon on my homepage and send me a Facebook friend invitation, I’ll link up with you on Facebook… and get you linked up with a couple of ME/CFS patients there. Can you just take the ‘add a message’ option and tell me you’re the Terri who’s looking to connect with ME/CFS patients when you send me a friend request?

Since twitter seems to have much more activity for ME/CFS, you might want to consider getting a twitter account too, if you don’t already have one. Please forgive me if the “ME/CFS” wording differs from what you’re used to. I know there is some naming controversy. This (ME/CFS) is the naming that was being used in May during awareness month so this is what I’m used to. Obviously I have heard the term CFIDS too. It’s confusing when there are multiple names for the same things.

I’m happy to hear you’re looking forward to part III! I have never written a series like this before. I sat down to write a post thinking, “I have a lot to write about. I may need to split the post into two parts”. The next thing I knew it had grown large enough to need 5 parts! To do it justice, I felt it needed some space. Much has happened to me in the last few weeks plus I have encountered a striking number of people with symptoms like mine. So I just had to give the subject the space I felt it needed. I hope that somehow sharing my own experiences and what I have learned may help others.

Jeanne

P.S. If you sign up for twitter, be sure to follow the @POTSawareness account. That lady is so nice and helpful!!!

11 Jenni Saake - InfertilityMomNo Gravatar { 08.06.09 at 12:16 am }

Not so much the “feeling faint” but the balance and dizziness and “feeling drunk” sound much like the two months of virdigo (or is it virtigo? never spell that right!) I had early this spring. My symptoms were also accompanies by severe mood swings, especially lots and lots and lots of crying. It was diagnosed a “viral labrithitis” or a viral infection of the inner ear, leading to vertigo. It took about 2 months to get about 95-95% improvement and another couple to fell about 98% full resolution in symptoms. Even now I can still have an occasional “wave” of that “drunken” feeling hit me by surprise, but usually days or weeks apart now and rarely very significant.

With your feelings of faintness being your primary complaint (and this not something I really dealt with), it doesn’t sound like we are probably dealing with related issues, but just wanted to let you know I feel for you! {hug}
.-= Jenni Saake – InfertilityMom´s last blog ..Happy Birthday to Me, My Gifts to Thee… =-.

12 Jenni Saake - InfertilityMomNo Gravatar { 08.06.09 at 12:17 am }

Oops, I meant to say, about 2 months to get to a 90-95% improvement. Sorry for the typo. :)
.-= Jenni Saake – InfertilityMom´s last blog ..Happy Birthday to Me, My Gifts to Thee… =-.

13 JeanneNo Gravatar { 08.06.09 at 12:44 am }

Endochick,

That’s interesting. I had used caffeine to help me through that first 3 weeks. Then my PCP told me to avoid it. Then my cardiologist said the same thing. Was your blood pressure too low when you woke up?

I’m sorry you went through all that. I’ve heard you talk of the smoke smells but I guess I never heard the “beginning” going back to last summer until I set out to write these dysautonomia posts. My husband has had those mini-seizures. He gets really, really tired afterwards. One might only last a few seconds but the aftereffects can be brutal.

Jeanne

14 JeanneNo Gravatar { 08.06.09 at 1:01 am }

Jenni,

There are so many conditions that can cause dizziness, lightheadedness, and “feeling drunk”. I think this is part of why people have such difficulty obtaining proper diagnoses. My husband had vertigo a few years back and what he had seemed different that what I have been having. Both involve the symptom of dizziness. However, there are differences. Neither he nor I experienced mood swings in conjunction with the dizziness and other symptoms. Amanda blogged about labyrinthitis HERE.

It does sound like different causes for your dizziness and mine. However, I appreciate the thoughts!

I wish you the very best of luck with your upcoming IV treatments!!

Jeanne

15 Dysautonomia? Part 3 — ChronicHealing.com { 08.06.09 at 6:49 pm }

[...] you haven’t yet read Dysautonomia? Part 1 and Dysautonomia? Part 2, please do so because this post won’t make much sense if you [...]

16 jeiseaNo Gravatar { 08.07.09 at 2:17 am }

Hi I’m reading your posts as I follow you on twitter. The autonomic nervous system basically is the one which directs your body to do things you automatically eg your heart to beat/keep rhythm, sweating, temperature control, causes BP to rise and fall.

Dysautonomia is when the messages are not correct eg the blood pressure my rise suddenly or fall suddenly with sometimes loss of consciousness. You may get a very fast or very slow heart beat. You may sweat inappropriately etc.

Dysautonomia is more common as we age. We can do things to cope such as getting up slowly to give our body a chance to adjust.

I got dysautonomia, I think, because of the stress of chronic pain for a long time. I notice you have chronic pain. If its decided you do have this it’s wise to pay attention to warning signs of drops in blood pressure.

Things which bring about balance between the sympathetic and parasympathetic nervous systems could be a great help eg meditation, acupuncture, immersing in water etc.

My dysautonomia was corrected by Yamamoto New Scalp Acupuncture, developed to treat neuropathic problems and stroke.

Hope things improve for you soon.

17 JeanneNo Gravatar { 08.08.09 at 12:22 am }

Hi Jeisea,

Yes, I remember you… my twitter friend. :)

I’m sorry I’m slower-than-usual in moderating comments. These dysautonomia posts are really keeping me hopping!

Yes, I have been reading quite a bit about the autonomic nervous system lately. It’s amazing how a “mayday call” from our bodies can motivate us to research as quickly as possible to get up to speed.

In my case, my blood pressure was very low in the first few weeks of this “episode”. Then it started spiking up and down (too low and then shooting up too high within a short span of time). Also, my pulse is low (both when BP is low AND when it’s high)… far lower number of beats per minute than I have ever had before.

Interesting. I haven’t come across any references to age as a factor. Do you know of any research studies on this? Yes, I have learned the crucial importance of standing up slowly. My body taught me that lesson early on. I have tried to bear it in mind because sometimes when I’ve been feeling (relatively) better, I forget… and my body gives me unpleasant reminders.

It’s interesting to me how very many people I have encountered in these last few weeks who have dysautonomia in some form along with various other chronic illnesses. I have seen some writings about it being considered a co-existing condition to a couple of specific chronic illnesses (at least one of which I have). I haven’t found a ton of research to support links to particular illnesses co-existing with dysautonomia as of yet but I think part of that is a sheer lack of research. I agree that paying attention to warning signs is important. (For example, I had my husband drive me around when I didn’t feel safe to drive due to symptoms like feeling faint).

I need to meditate more often than I do. I LOVE acupuncture!!! I hadn’t heard anything about water immersion in relation to dysautonomia. Does that help you?

That’s awesome that your acupuncture is helping you! I haven’t had that specific type. My acupuncturist does Japanese acupuncture (a combination of Manaka and merdian therapy). That’s fantastic that you’ve gotten such benefit.

Thank you so much for your detailed & thoughtful comment. :)

Have a wonderful weekend!

Jeanne

P.S. I just left you a comment on your post about the acupuncture you get.

18 YayaNo Gravatar { 08.08.09 at 9:45 am }

Oh Jeanne, I didn’t realize it was this bad.
.-= Yaya´s last blog ..Friday Fragments/Focus Friday =-.

19 JeanneNo Gravatar { 08.08.09 at 11:27 am }

Alicia,

Honestly, I have grown accustomed to poorly understood conditions affecting me. I’m used to having to advocate for myself and do my own research to prepare for appointments with doctors. So the good news with this situation, however scary it did get at the “rock bottom” I had a few weeks back, is that I was equipped to seek out appropriate medical help. Also, it is wonderful to have access to such great information online. Last but not least, awesome (in real life) friends like you are always there for me!! I feel really fortunate, actually! :)

Jeanne

20 Dysautonomia? Part 5 — ChronicHealing.com { 08.12.09 at 2:27 pm }

[...] Dysautonomia? Part 1 Dysautonomia? Part 2 Dysautonomia? Part 3 Dysautonomia? Part 4 [...]

21 Chronic Camp ‘Carnival’ — ChronicHealing.com { 08.01.11 at 11:10 pm }

[...] 102 degrees Fahrenheit – or 38.89 Celsius). With my heat intolerance (discussed previously here), the weather was a major issue for me. I’m not complaining. I signed up for a July trip. I [...]

22 SheanybirdNo Gravatar { 12.05.11 at 3:06 am }

Wow..I have some typing to do. I have been dealing with this problem for about 14 years and the worst of it for 8. It all started with vascular issues after I had my son. Small varicose veins. Then, IBS. No biggy. After my last birth 11 years ago, my stomach stopped functioning. Gastroparesis. 3 years later, I began having flutters in my chest and a feeling of anxiety with it. After many doctors and tests and diagnosis’ of anxiety and depression, a tilt table test proved them wrong with a diagnosis of neurocardiogenic syncope. The feelings were strange and scary. I would feel a little odd, then have a strange, electrical, adrenal like rush from my midbody to my head. Tingling rushes to my back, neck, buttocks. Everything sounded far away and looked different. I felt like I was being pulled down in my center. I would run short of breath, most likely because of a racing heart. My normal heart rate is 70 bpm and bp 60/117 or so. Both would skyrocket. The NCS dx was an answer, but I still needed to know more. I continued to go to doctor after doctor. After the tilt test, I was put on Nadalol/beta blocker 240mg a day. It doesn’t stop the attacks, but keeps them minimal and short instead of them lasting for 10 hours and wiping me out physically and mentally for 2 weeks. Paxil 10 mg a day was added which helps the nerves in my chest and head to not be as sensitive. my 2nd neurologist diagnosed me with MULTIPLE SCLEROSIS after an MRI with contrast. With the research I have done in the past 8 years, I have found out a lot. The biggest thing is that MS and dysautonomia are most likely related. It seems the starting point is a bad vascular system. Leaky vessels from inflammation in the blood due to a lack of a specific neurosteroid that protects the brain and BBB from inflammation. So far, it has been proven that MS sufferers are more likely to develop optical neuritis from the myellin being damaged by Tcells that are out of place and don’t recognize the nerves as part of the body. It has also been proven that the vessels around the optical nerve are leaky when this happens. There is a condition called CCSVI which often leads to the autonomic symptoms I described and most always accompanies MS. The U.S. is researching it now and some trials are being done. The problem occurs in the jugular veins and veins at the base of the brain, that lead away from the brain and BBB. They become leaky, weak, clotted or narrowed and Chronic cerebro Spinal Insufficiency results. (CCSVI) The testing for this is very hard to accomplish here and the stinting or angioplast is not approved by our FDA and therefore, not covered by insurance. There is still a problem with the stints. They can kink and cause a stroke. Still in the research phases. There will be a drug available in about 6 years, after trials, that replaces the missing neurosteroid. This could bring hope to MS sufferers and hopefully to other issues caused by inflammation in the blood. Magnesium and vitamin D3 are most recommended. Magnesium helps the nervous systems and helps regulate the heart and some 80% of Americans are deficient. It is a crucial nutrient to our bodies for metabolizing calcium. I am now on several different drugs, just to feel almost normal, including a weekly injection of beta interferon to slow the progression of the MS by distracting the immune system. A few of my doctors now, agree with me on my theory that the immune system can also attack the healthy myellin on the sympathetic and parasympathetic nerves and may not be limited to the central nervous system. Just waiting for science to catch up now. The symptoms I have with MS are, memory difficulty, cognitive issues at times, pain behind my left eye, blurred vision at times, migraines, headaches, sleep disturbance, fatigue, incontinence, heat intollerance, thin hair, dry skin, tingling in my hands and feet, cold feet, cold hands, bad balance, some back and neck pain, muscle spasms, chest muscle pain, joint pain…with the dysautonomia, I have gastroparesis, nausea, chemical/drug sensitivity, (including ephedrines, caffeine and anything that stimulates the heart, stomach, intestines or pancreas), allergies, random feelings of anxiety or adrenal rushes, heart palpitations, premature ventricular contractions (PVC’S) NCS, ectopic heart beats and afib. I have vascular disease and I am sure…that’s where it starts.

23 JeanneNo Gravatar { 12.07.11 at 2:04 am }

Welcome Sheanybird!

I was hoping to do a detailed reply to your blog comment tonight – but I am utterly exhausted (getting over a virus) and need sleep ASAP. So, I’ll have to take a rain-check for now but I didn’t forget you. I’ll post more as soon as I’m able.

Thanks for your patience!

Jeanne

24 JeanneNo Gravatar { 12.07.11 at 1:51 pm }

Sheanybird:

Thank you for your patience. Normally I respond more quickly but your comment was very detailed and I wanted to give it my full attention. It has been a wild week so far (on many levels). I’m finally catching up a bit.

I’m sorry for everything you’ve been through and that you have had to go to so many doctors. Sadly, this seems to be an all-too-common phenomenon for patients with chronic illnesses that are poorly understood, misdiagnosed, and/or inadequately treated. It’s unfortunate that the burden is on the patient to “hunt down” the doctor or team of doctors who will “crack the code”, so to speak – so that a patients’ symptoms are at least better controlled.

I take a beta blocker as well. My neurocardiogenic syncope is not as severe as yours. After some tweaking with my beta blocker dose (which has had to be modified because my migraines seem to cause my blood pressure to spike up and the higher beta blocker dose causes my pulse rate to plummet) and factoring in that I need to deal with the fact that my beta blocker worsens my Reynaud’s symptoms (very cold hands and feet!), I have been fortunate that my neurocardiogenic syncope has calmed right down. I was pleased that I didn’t need to wear my compression hose very much this past summer. (Heat intolerance triggers my syncope). So, I am fortunate that the neurocardiogenic syncope is one of my only illnesses to have gotten under control.

I have a profound empathy for anyone who has neurocardiogenic syncope or any form of dysautonomia because I remember like it was yesterday what it was like for me when it was not under control. Neurocardiogenic syncope is just one of several things that has caused me to faint (or almost faint) over the years.

One of the other chronic illnesses I have is MCS (multiple chemical sensitivity). So, simply walking by the detergent aisle of the grocery store has caused me to faint before. I have fainted in doctors’/dentists’ offices on multiple occasions. (In those cases, new carpeting in those offices was often to blame). So, the strange and scary sensations you described sounded all-too-familiar to me. Syncope is no fun! Neither is near syncope.

I recently had to have a tooth extracted and needed general anesthesia (long story but I’d had previous anesthesia failure). Before they gave me any medication at all, they had me hooked up to a machine that measured my blood pressure and pulse. I was on a higher beta blocker dose at the time because of migraines (and blood pressure spikes). The woman from the oral surgeon’s office asked me if my pulse is usually low. It turns out my pulse was only 44! Needless to say, I’ve since had to do more tweaking – after talking with my doctor about the fact that I thought my low pulse was due to the (recent) doubling of my beta blocker. (She agreed that the beta blocker has likely caused that to happen). Since adjusting my beta blocker dose, my pulse is back to normal. Over the years, I’ve had some scary blood pressure spikes. (I once had a BP of 250/153 during a time when I was hospitalized). It’s amazing how quickly pulse and blood pressure can rise and fall.

I’m sorry that you have had such a terrible time with neurocardiogenic syncope. I’m glad that you have found things that have improved your symptom severity/frequency with that. I know how frustrating it can be to find a good neurologist. (I’ve had several). I’m glad that you found one who was able to properly diagnose your MS. I know getting an MS diagnosis isn’t always the most straightforward process. I’m not well-versed about MS but it is one of the many things I have been tested for over the years. One of my blog readers, Laura, has MS. She is just a joy. You might want to check out her blog. It’s always uplifting, thoughtful, and insightful!

I’m really not that familiar with CCSVI but it sounds like you have spent a great deal of time researching and it’s great when patients advocate for themselves in such a way. I know I do a great deal of research about the illnesses I have and it enables me to talk with my doctors at a level which is more helpful than if I hadn’t done that legwork. It helps me know what to ask, when to question (or push) doctors more on things, etc. Hopefully the medical research you mentioned will lead to advances in MS treatment.

My vitamin D3 was deficient when I was tested. So, I take that in a supplement. Yes, I have heard/read about the importance magnesium in many places.

I’m sure it can overwhelming to experience the symptoms you listed. With the long list of chronic illnesses I have, I have many symptoms in common with you. So, I truly understand that it can be overwhelming.

Thank you for sharing your experience here. I hope that your doctor(s) are able to keep helping you to feel better and to have an improved quality of life. It sounds like you are very proactive in learning about your illnesses and I think that is a great thing. I know it helps me to be proactive about mine!

Take care,

Jeanne

25 RichNo Gravatar { 12.07.11 at 4:02 pm }

How is your shortness of breath? I saw that you wrote you have POTS and during a stress Echo you were suspected for Pulmonary Hypertension. How did the specialist rule out PH? I have POTS and my major symptom is SOB, I believe I have PH. I believe that our POTS makes it hard to detect and because our ANS changes on posture..? Thanks, Rich

26 JeanneNo Gravatar { 12.08.11 at 12:50 am }

Welcome Rich!

I actually haven’t had shortness of breath in awhile. I believe, in retrospect, that the primary reason I have had it in the past is from untreated/undiagnosed obstructive sleep apnea.

I was initially suspected to have POTS but was later told that I have another form of dysautonomia (called neurocardiogenic syncope).

The reason I was referred from the cardiologist to the pulmonary specialist was that my lung pressure reading was too high on the echocardiogram/stress test. The pulmonary specialist I saw sees only PH or suspected PH patients. That’s his area of specialty.

When I saw him for an initial consultation, he very thoroughly reviewed my records (which were extensive since the form he uses asked a lot of questions about symptoms that I have from various illnesses). He really looked at the big picture in an impressive way. He took a lot of time understanding my symptoms. He asked me a ton of questions. My husband went with me to the appointment and he asked him a ton of questions too. Some of these were questions I couldn’t have answered myself (such as questions about classic symptoms of sleep apnea – like snoring and making unusual breathing sounds while asleep). Obviously, I can’t hear myself snore but my husband was happy to answer his questions. (In other words, I think my husband was happy to see a doctor on the right track. My husband had commented to me that he wondered if I had a sleep disorder years before I was diagnosed). Score for my husband’s diagnostic skills.

Anyway, the pulmonary specialist certainly didn’t cut any corners and I did have a bunch of pulmonary tests done following my conversation with the doctor that day. However, I believe he had all but ruled out PH based on the very thorough medical history he got from me. He didn’t officially rule out PH just from talking with me, of course. However, talking with me and reviewing my medical history is what led him to refer me to a sleep disorder clinic to be evaluated for sleep apnea. When I met with him, I sensed that he was clearly expecting the sleep study to confirm his suspicions. Then, when the overnight testing there confirmed that I do, in fact, have obstructive sleep apnea… he officially ruled the pulmonary hypertension out.

He told me before he sent me for the sleep study that the abnormally high lung pressure reading I had could be connected with the sleep apnea. Since none of the pulmonary function testing came back with anything that was really far off, the sleep apnea then got the blame for my high lung pressure. (One pulmonary test I had was a little strange but the technician told me that it could be off kilter because of my Reynaud’s).

Have you been evaluated by a pulmonary specialist? I’m certainly no expert on PH by any means (!) but I did do quite a bit of reading about it during the two months it took to be evaluated by the pulmonary specialist and I would think that a doctor specially trained in PH (like the specialist I saw) really should be able to determine whether someone does or doesn’t have PH.

I’m not sure what the availability of such doctors is in your geographic area but a pulmonary specialist is who I was referred to in order to rule PH in/out. I am thankful that the doctor I saw was very thorough and was able to quickly all but rule PH out. The sleep study confirmed what was happening in my case but I could tell by the way the doctor spoke (even before the that study was done) that he was nearly certain that sleep apnea was my issue rather than PH. (My dysautonomia diagnosis actually came years later than the workups for PH and sleep apnea).

Obviously, there are a great many things that can cause shortness of breath (including dysautonomia). I really hope that your doctor(s) can help you determine what is happening in your case and help you to feel better.

Jeanne

27 RichNo Gravatar { 12.08.11 at 3:53 am }

Dear Jeanne,

Thanks for your response. I have been doing ton’s of research in Dysautonomia not just POTS and PH. I believe that by looking at so many various sources of information and pooling it all together I have really made strides in figuring out Dysautonomia. One day i hope to publish my research and help cure it. I believe our dysfunctional ANS causes localized vascular tension abnormalities, especially related to certain cells such as Endothelium that regulate our chaotic vaso dilation and constriction. Each Dyautonomia person has more cell damage in a certain area of their body and then they have more BP issues in that organ and they can tell by the relation of their worst symptoms.

I don’t know what the total % of Dysautonomia patients that have breathing issues but it is around 25% and we all don’t symptoms to the same extent. I believe this can be traced to the cause of our Dyautonomia, for example if we inhaled toxic substances or if we inhaled toxic substance while we were vulnerable.. I believe people with more Neurological issues have the same problem but have intracranial hypertension issues.

I also believe that these issues can not be picked while we are lying down. I believe that we have to be in a exercise or Tilt environment because that’s when our ANS does not act as it should.

I’ve really become an expert on PH testing, what tests have you had to rule it out exactly? I know of a woman with Dysautonomia and PH and she actually had a right heart cauterization [Editor's note: I believe this would be heart catheterization rather than cauterization?] laying flat and it showed no PH, but when she does a Stress Echo it shows increasing PH.

The fact that you have sleep apnea actually points to the fact that you do have PH. If you watch this video of one of the top PH doctors in the world at the Mayo Clinic at around 9:40 min into the video he states the link btwn the two Pulmonary Hypertension Treatment and Research – Mayo Clinic , but he says that controling the sleep apnea actually has a very beneficial effect on the PH. So it’s great news you found out about that.

The other thing is PH is always secondary to other diagnosis and that if Dysautonomia is causing PH then when it goes away or is reduced then that helps normalize PH. So if I’m right the good news is that it’s not the typical chronic/progressive type of PH. And if our Dysautonomia is controlled so will our PH and if we do get bad PH symptoms, we will just have to treat them temporarily until our Dysautonomia is controlled again. Unfortunately this theory doesn’t lead to the prevention of Dysautonomia, but it will lead to better treatment and care.

I’m talking with a leading researcher of Dysautonomia right now and will be getting test within the next coming months for PH. There have been many advances in testing in the last 3-5 years that 99% of the doctors out there are unaware of unless they work at a top ten hospital where they pay millions to get upgraded machines. For example the is a new CT Scan that is 10x more powerful and the normal ones and uses 50% radiation and 50% contrast. There is only about or two in every state so far. I had to call up the manufacturer to get a list. Even top hospitals that you think have it, don’t. They can see many more things on this machine and actually new technique that never could be used before have been invented. Unfortunately CT machines are only used in the laying down position..

Best regards,
Rich

28 EndochickNo Gravatar { 12.08.11 at 10:25 am }

Sheanybird –

While not all forms of dysautonomia have an autoimmune origin, there is a subcategory of the disease that is. Autoimmune Dysautonomia is caused by the body’s autoimmune system attacking the autonomic nervous system. With autoimmune disorders – I have two and doctors now wonder if my dysautonomia is generalize autoimmune dysautonomia – the more you have, the more likely are to acquire more. I don’t have on hand the actual statistics with me at this moment, but a physician once told me that if you have one autoimmune condition, you’re chances of getting another are 50%. Now if you have two, the chances of a third increase to 70%, and so on. With each autoimmune disorder you have, the chances of acquiring more become easier. As I’m sure you know, MS is an autoimmune disorder. This, then, gives you 50% chance of having autoimmune dysautonomia – if, in fact, that is what you have.

The following website offers some information about this condition. Some of the terminology may be hard to get through, though, if you don’t have a sufficient medical terminology background.

Autoimmune Dysautonomia Evaluation

Endochick´s last [type] ..Childhood Bullying: will this ever stop?

29 JeanneNo Gravatar { 12.08.11 at 5:35 pm }

Rich:

I think it’s really great that you have such enthusiasm and desire to find solutions. I had the tilt table test you mentioned and I understand that it can detect things that can’t be detected when the patient is lying down.

You indicated that you’re an expert on PH testing. I don’t wish to question your qualifications in any way but I do wish to clarify for readers how I myself use the term expert on my blog because I think it’s important to have clarity with such terms.

I do not ever define myself as an expert on any medical topics because I am not a trained healthcare professional (such as a physician) and I am not a scientist conducting medical research. I have lived with endometriosis for almost 30 years, I have done an enormous amount of “personal research” (for lack of a better term) on endometriosis, and I’d love to help find a cure for it someday (if I knew how!) but I would never call myself an expert on endometriosis.

I mention this because I think it’s important to have clarity in regard to the topic of authority regarding medical issues. One of my friends (who is a fellow endometriosis patient) has written research papers on the topic of authority (regarding online discussions of medical topics). She and I have had many in-depth discussions about the issue of authority. So, I just wanted to put that out there to clarify how I myself use the term expert on my blog.

As I mentioned previously, I had testing done at the pulmonary specialist’s office. Honestly, I couldn’t tell you the specific names of the tests because the pulmonary technician who performed them did not tell me what they were called. I am a very inquisitive patient who asks a great deal of questions and it’s rather unusual for me to have tests done and not know what they were called.

In the case of my appointment with the pulmonary specialist, he spent an enormous amount of time with me up front. Then, he turned me over to a technician who did a fast-paced series of tests. There wasn’t really time to ask a lot of questions because I was inhaling or exhaling on command the entire time I was with him. All I can tell you about the pulmonary function tests is that the machines were quite large (almost like sitting in an airplane cockpit for one of them) and I just breathed in and out when/how the technician told me to.

I did not having anything invasive like a heart catheterization. (I added an editor’s note to your blog comment because I was almost certain that you were referring to heart catheterization and I didn’t want to confuse readers).

My lung pressure was elevated on one test only (the initial echocardiogram/stress test). I have never had a high reading like that since. The echocardiogram/stress test I had subsequent to that one did not show any increased lung pressure at all.

I should have done a better job explaining what the pulmonary specialist’s reaction was to my medical history and sleep study results. I may have paraphrased what he said slightly differently than what he meant. He did “rule out” PH when my sleep apnea diagnosis was confirmed. However, I would bet that he’d acknowledge that it is possible to have both sleep apnea and PH.

I know that I have had many incidents over the years where doctors tried to do a differential diagnosis on me (by looking at 2 potential diagnoses of illnesses with overlapping symptoms)… only to eventually discover that I did, in fact, have both illnesses.

For example, some doctors look at patients with certain symptoms and try to determine whether they have endometriosis or interstitial cystitis. However, many patients (like me) have both endo and IC.

So, I totally understand that having sleep apnea doesn’t prove that I do not have pulmonary hypertension. At the same time, the issues that caused my cardiologist and pulmonary specialist to evaluate me for PH no longer exist and the pulmonary specialist is satisfied that I don’t have PH. I can’t really attribute the improvement I’ve had to sleep apnea treatment because I have not yet been able to successfully wear the CPAP headgear every night for any length of time. (That is another long and complicated story. I need to work on that).

My dysautonomia symptoms occurred years later and have also resolved (with beta blockers). So, I am not having dysautonomia symptoms, not having shortness of breath, and my lung pressure is normal. So, I understand the pulmonary specialist not seeing a need to pursue monitoring for PH because of the absence of symptoms. Certainly, if symptoms were to resume I would not hesitate to pursue them.

Despite the difficulties I have encountered in treating my sleep apnea, I am grateful for being properly diagnosed. Due to my multiple chemical sensitivity, I have taken a long “break” from the CPAP machine because the tubing was apparently making me sick. Before that, I struggled for years to find a headgear that I could wear (long story). I am thankful for the diagnosis, though, and I have not given up on CPAP. I have been trying to find a way to consistently use CPAP for a very long time. I’m overdue to give it another try.

Thank you for the educational video clip. That doctor was informative. I normally shy away from posting (on my blog) links to commercial sites, doctors, specific healthcare facilities, or brand name drugs – but I thought the educational value of that particular video made it well worth posting (even if it is promoting Mayo Clinic and if it does feature a specific doctor).

I understand about PH being a secondary diagnosis. My dysautonomia cropped up years after the PH evaluation I had. While I understand that it’s possible that I had some sort of latent dysautonomia, the timeline in my case doesn’t line up to point to dysautonomia causing PH. I am thankful not to have dysautonomia or PH symptoms. I have profound empathy for those struggling with these issues on an ongoing basis.

That’s wonderful that you are working with a leading researcher and I really hope your PH testing is helpful for you in getting relief/answers. It’s unfortunate that the machines are so scarce. Hopefully that will improve so that patients can get the screening they need. Hopefully advances will continue to be made. The doctor in the video talked about PH being potentially curable someday. He didn’t strike me as the type to throw around wording like that lightly. So, hopefully he’s right about that.

Best of luck to you with your testing and I hope it yields useful information so that you can get relief!

Endochick:

Thank you for taking the time to post a message for Sheanybird. I know you have lived with dysautonomia since you were 15 years old.

It must be Mayo Clinic day. As with Rich’s video clip about pulmonary hypertension, I am posting the link you provided about dysautonomia because I think its educational value makes it worthwhile for me to ignore my usual rule regarding not posting links that are specific to commercial organizations and such. Thanks for taking the time to reply to Sheanybird’s comment.

~~~

Jeanne

30 LaurenNo Gravatar { 12.19.11 at 8:23 pm }

I have CFS which was under control for years but suddenly developed POTS/dysautonomia. I feel so nauseous all the time, no appetite, heart rate rises upon standing and suddenly can’t sleep at night. Am thinking about beta blockers. One MD said florinef. Can anyone tell me- will a beta blocker help with the myriad of symptoms or just the tachycardia? I have been ill for weeks and can’t leave house. Does it get better????

31 LaurenNo Gravatar { 12.19.11 at 8:23 pm }

Thanks , would appreciate any advice or encouragement.

32 EndochickNo Gravatar { 12.20.11 at 12:22 am }

It can take time, but once your nervous system heals itself, you’ll find a normal. It will be a new normal. I would ask to see a neurocardiologist or a neurologist/cardiologist who has EXPERIENCE with dysautonomia or a willingness to do his/her homework and be receptive to input. Also, I would suggest checking into compression stockings that are AT LEAST thigh high!! Drink plenty of water – at least 8 glasses. No caffeine and limit stress. Stay out of hot showers. And get rest. My neuro said during a flare your nervous system is on high alert and adrenaline is surging. When you have a flare all you do is take measures to help you ride the wave to shore.
Endochick´s last [type] ..Childhood Bullying: will this ever stop?

33 JeanneNo Gravatar { 12.20.11 at 1:29 am }

Welcome Lauren!

I am really sorry you are struggling with the symptoms you mentioned. I’m sure you must be very frustrated (and probably even scared) about what’s happening. It’s normal to feel all sorts of emotions when such a challenging set of symptoms hits so hard. In my experience, getting new diagnoses always brings some degree of anxiety/uncertainty. When it’s severe enough to keep a person home, it’s incredibly stressful on many levels. You are not alone and there are many people struggling with similar issues to those you’ve described.

Hopefully, something here will give you hope and/or information that will assist you in moving forward and navigating the healthcare system to find the best quality of life possible given your personal set of circumstances.

I wish that I could give you “advice” but I personally believe that only your own (or their own) health care provider(s) can safely give you (or anyone) medical advice. (In other words, I wish I could tell you how a beta blocker would affect you but the truth is that I really can’t). Only your physician(s) can safely advise you based on your specific medical history, any contraindications you may have, etc. as to what medication might be helpful in your specific case. What is helpful for one patient may not be in the best interest of another. I believe this principle applies across all sorts of illnesses/symptoms. A medication that works wonders for one patient might harm another patient with the exact same diagnosis/diagnoses and/or symptoms.

That said, I certainly understand your desire to interact with other patients who may have things in common with you! I know that interacting with fellow patients has been extremely helpful to me over the years for a variety of chronic illnesses. So, if I seem skittish, it’s only because I don’t like ever giving anyone what I would call “advice”. I like to stick to suggestions, ideas, tips, etc. as opposed to advice.

I definitely try to give encouragement whenever I can and I can email you directly to see whether you are interested in me trying to get you linked up with some patients who have similar symptoms/diagnoses to yours if you like. I have a few specific Facebook friends in mind who you might wish to connect with (some of whom have blogs that might interest you too). Connecting with them might give you both encouragement and information. I’ll email you to see if you’d like to try to link up to the people I have in mind based on what you said in your comment. I hope this is helpful in some way.

I know you said you can’t leave the house (and I have met many people online who are bed-bound or housebound due to dysautonomia and/or CFS). I don’t know if you have anyone to help you (i.e. with transportation) and whether or not you would be able to leave home just for the length of time involved with a medical appointment – or if you are too ill to do so.

Obviously some of the comments on this thread refer to measures (such as finding an experienced doctor for treating dysautonomia) that may not be within your reach at the moment – if you are unable to leave home to see a doctor. So, I apologize in advance if the latter is the case (and if these comments potentially add to your frustration).

Sometimes patients who are confined to home and/or bed mean 100% of the time and others mean that they can leave home for medical appointments only — but are home otherwise. I’m not sure which situation you’re in. So, I’m sorry if any of what I said above just adds to the frustration… such as if leaving home to see a doctor is not feasible at this time).

So, we can connect via email and see if you’d like to link up with some of my online friends who have similar symptoms/diagnoses to yours. Sometimes it’s a comfort just getting connected to others who are home-bound or bed-bound and/or exchanging ideas for feeling better. There are a great many people active online (despite being home-bound/bed-bound) who are living with both CFS and dysautonomia. Some cases are more severe than others but there are lots of people with symptoms ranging in severity all across the spectrum. Hang in there and I’m glad you commented here! I hope you’ll keep in touch.

Endochick:

Thank you for your feedback for Lauren! Like you, I was prescribed compression stockings (mine are just knee high but my symptoms were much more short-lived than yours). I ditched my first cardiologist and am much happier with the second one. (I personally haven’t had very good luck, sadly, with neurologists… who I have seen for other issues besides dysautonomia). I’m glad you have a team of doctors that understand your complex situation and listen to you. The importance of drinking sufficient water was stressed (by various doctors) to me as well. I was also given speeches about caffeine and stress. Rest is definitely important. I think it’s really important, as you mentioned, to find a doctor who is truly experienced with dysautonomia. The difference between the two cardiologists I have seen was significant. One (the second one) was much more thorough than the other and seems to have a better understanding of dysautonomia. I really think it’s important to have the most experienced doctor possible to treat dysautonomia.

~~~

Jeanne

34 JeanneNo Gravatar { 12.20.11 at 1:40 am }

Endochick:

I just realized that I had missed what you said about hot showers. Dizziness during showers has been a major problem for me in the past. Back when my dysautonomia was really bad, standing up for the length of time it takes (to take a shower) was completely out of the question. I had a few minor-but-scary falls before I finally broke down and got a shower chair. I found a plastic one at CVS for under $30.00 and it was a lifesaver! The hotter the shower, the dizzier I am liable to get. Feeling dizzy/faint/nauseous is bad enough normally – but when it happens in the shower, it’s really awful! (No one wants to fall in the shower and hit their head). So, for anyone who has a hard time with this aspect, I can’t say enough about shower chairs!

Jeanne

35 LaurenNo Gravatar { 12.20.11 at 9:37 am }

Endochick
How long does a flare last? It has been over three months? Does it settle down over time in terms of weeks or months or years? At first I could not get out of bed. Now I can but have nausea and dry heaves and chills a lot of the time.

36 JeanneNo Gravatar { 12.20.11 at 2:14 pm }

Lauren:

Every patient is different. It is beyond difficult for a patient to predict how long his/her own flare-up will last. To predict how long another patient’s flare-up will last would be impossible for any patient to do.

I really hope that your symptoms improve significantly and as soon as possible. I’m sorry that you are so ill.

Best of luck to you!

Jeanne

37 EndochickNo Gravatar { 12.20.11 at 3:31 pm }

Lauren, as Jeanne said, each patient is different. Your response to the dysautonomia and how you body reacts to and heals from it is different, too. My recent flare up began in June and it is now almost end of December. I have had longer stretches, but none exceeding 10 months. And, of course, the degree of severity changes even within a flare up. I’ll had good days (which are no where near my normal good days) and bad days, and then really bad days. I had a severe dizzy spell the other night that left me incapacitated. But the next day, I was able to function as long as I drank my water, ate my salt, and got those stockings on me BEFORE I got out of bed.

With my dysautonomia, it always seems to get worse before it gets better. Yours may be different.

What has always been beneficial to me is 1) drink 8 glasses water a day (100 ounces in hot weather or when exercising a lot), 2) compression stocking – thigh high is ideal – BEFORE getting out of bed, and 3) increase salt. This doesn’t mean junk food, because when we are ill like this it’s even more important to take care of our bodies. Good nutrition, REST (I CANNOT stress this enough!!), and reducing stress really do help limit the severity and length of flare ups. I have had this my entire life and those three things have seem me through some pretty bad flares. The worst flare up I had was when I was nearly bed bound for an entire summer. So, it does get better. It will take time, and no one can give you a specific time – not even a physician. When we have these flare ups, our autonomic systems have kicked into over gear, this taxes our other vital systems making them work harder to keep the body kicking. So, think of it as rebooting a computer. All you can do is press the reset button and wait for the darn machine to boot up. Depending on the programs loaded (ie. other chronic illnesses you may have, daily and chronic stress, whether you are taking care of yourself, measures being taken to reduce severity of flare up) the longer it’s going to take for our bodies to kick on and work properly.
Endochick´s last [type] ..Childhood Bullying: will this ever stop?

38 LaurenNo Gravatar { 12.20.11 at 7:11 pm }

I don’t quite understand how compression stockings work? I don’t have low blood pressure but do have tachychardia. Would they help? I have tried them three times…had them on about two hours each time and just felt relief when I took them off. Of course, I am in bed much of the time so maybe that is the problem.
Also, I have been adding 3,000 mg of sodium to my diet for a while. Went to MD today finally and he said to increase it. Anyone have an idea of how much salt and how much fluid to add to increase blood volume? And how long does it take to notice if it is having beneficial effects.
I am glad to hear that in some cases there are better days and better times. I guess a flare is like a relapse in some ways?

39 LaurenNo Gravatar { 12.20.11 at 7:23 pm }

The nausea is so bad…is there anything that helps? Or does that die down on its own or as the flare subsides? It is so severe each day and I get
dry heaves in the night. Not so much fun.

40 JeanneNo Gravatar { 12.20.11 at 11:46 pm }

Lauren:

It sounds like you have a number of questions. I urge you to contact your own physician for questions regarding the appropriate treatment for your individual situation.

Jeanne

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