Strange Days Indeed...
 

Just feeling sorry for myself. I have had a terrible attack of dysautonomia over the past few days. If testing is to be done, now is the time. But things don't work out that way, do they...

It started with my bladder - feeling the need to be emptied every ten minutes, or so, and in large quantities. Then some of the worse of it yesterday. My heart yo-yoing all over the place tachycardia to slow pace. Every time I get up, it gets worse. I get those white dots in my eyes almost constantly. And the pain... My stomach also stopped working - the dreaded gastroparesis. Also, severe nausea and temperature fluctuation. My arm always hurts, but my fingers started hurting on the fingertips. They feel bruised.

The only thing that helps is taking an ambien, laying down and going to sleep. This seems to be the only relief. Sleep and time.

I guess I just needed to unload. I hate it when I feel like this...

Mere

Sorry about your attack. I get similar stuff with the heat in the summer and if I sleep on my stomach, or lean a certain way. Certain things trigger my symptoms or keep them at bay(not always easy to mind this or work with but....)

I was wondering if you noted anything that might have precipitated your current state? I.E. eating something different, bending a certain way, sleeping differently, spraining or straining something, exercise. Maybe exposure to a certain herb or chemicals and/or life events, etc.

Gosh, that sounds awful.

I really would have your doctors take a second look at the verapamil. You know it might be a culprit in all this.

Slow GI-- a very typical side effect
orthostatic hypotension-- very typical

One should always re-examine any drugs they are taking for
hidden long term side effects. The obvious can always sneak up on you!

Mere, sorry you are feeling funky.....such is life with dysautonomia....I have developed SVT and they have me on a small beta blocker dose, which in my opinion is not helping matters....I can still feel the rapid take offs, which they say are up to 250-300bpm (but not sustaining). I have accepted the fact, that I am going to take a digger one of these times I get a gray out.

Foo is all I can say. I will say a foo for you too....that would be foo, foo. (Sounds like a French poodle name.)

Hang in there. This crud comes in waves. I agree with MRSD.....check the meds.

I went shopping today, with my friend of 25 years, who has sarcoidosis....I say the only thing worse than being me, is being her.....she says, it is worse to be me. I dunno.

She got breathless trying on dresses (mother of the groom) and I couldn't help with the zippers....could not see, and could not grasp the zippers and clasps. I laughed and reminded her we used to bike 30 miles at a pop years ago, and now, we are exhuasted trying on gowns! Foo, foo....and one more foo for her too!

I wonder why so many of us are sick??? (With roughly the same crud.)

Oh, one more thing, they offered me a EPS electrophysiology study, "if I was REALLY concerned'--:mad:--which meant if I was really a hypochondriac about this;)....but, I decided to wait on it until this gets worse....I am not real excited about an invasive procedure especially if this isn't bad enough to have sent me to the ER yet. Sounds Mere, like we have a very similar profile. If you are on verapamil, do you have SVT as well?

Since I went on the beta blocker now my calves hurt really bad! No winning.

Your stuff will show up on the autonomic testing regardless of how you feel. I feel whacky ALL the time now. It is my new normal....but hey, I am still here!

Also, I go from bradycardia to this SVT....40 to 300 in a second, lol. Maybe I should go out and hold onto the electric fence again!??:o

I really cannot think of anything that might have precipitated this. That is what I have been thinking about. My husband complained of some tummy issues earlier this week, perhaps a small viral infection spurred it on? Usually, I have no idea what causes these attacks when they occur.

The verapamil seems to help me at other times. Usually keeps my heart rate low and steady and seems to keep the migraines minimal. I used to take a beta blocker, Coregard, perhaps it would be better better. I will question it with Dr. Khurana when i see him.

Today is better. I am so relieved. Not great, but better... At least I don't feel as though I am checking out... Not to sound too dramatic, but the feeling it just horrible.

Thanks for your thoughts...

Mere

I am sorry Cyclelops, from reading your posts, I know that you suffer terribly... Yes, I do have SVT. It was the first symptom that I had 17 years ago. It is usually under control - until I have an attack. Occasionally, I have breakthrough tachycardia, but usually when I have migraine or these attacks. I think the migraines are related too. Sometimes, they herald an attack.

It is nasty stuff... and there really is not much available for relief. I know I could go to the er... but then I think, what would they do? Tell me I am having anxiety attacks? That is what they used to say years ago when I did go to er in the beginning.

Mere,

I DO hear your feeling that you will 'check out'. I have said that a million times in the last 10 years....but...I am still here! I guess that merits a hooray!

The huge KEY to living with this condition is an acceptance that I indeed MAY check out, and not much I can do about it! I would so love to be 'normal' for one day. (On the other hand, if that happened, I would bemoan not being normal for yet another day.)

Yes, it is depressing...but it is what we have been dealt. At times I want to bop some healthy person on the head, just for being healthy!:o

Foo Foo, Poo Poo, Doo Doo to us! But, sarcoidosis is nasty. Sorry to hear about your friend. My younger brother had it and then it did get better. It is now non-existent in him. Sometimes, it goes that way... Lucky for him...

I don't know why there is so much illness as you you mention. My husband and I wonder the same - especially many people we know with autoimmune disease... Were we exposed to something in the 1950's and 1960's? I was a Navy brat. Was there 'something' in my immunizations? You could get paranoid if you think about it too much... (Twilight Zone music). Or better yet, The Outer Limits.

Mere

Yeah, me too... I am still here. After the flare passes, I feel like such a hypochondriac. Also, to top things off, I look perfectly healthy. And I mean healthy. For most of my life, I was athletic, very thin and youngish looking. Now I have that belly bloat, have aged more than my share and am about 30 pounds overweight. :nopity:

You are right, we just have to learn to accept it. Though, I still feel bitter about it...and feel jealous of those who are fit, healthy, have a job, and never have to feel bad every day. I wonder how most would feel if they felt like they were going to 'check-out' now and again?

Just smack me now...

mere

You can borrow my foam bat.....as for some healthy person to bop...you have to find your own!:p

I wouldn't smack youuuuuuuuuuu!:p

Hey, I never knew a bizzare disease like this one existed! I never heard any one talk of symptoms like these. Then add insult to injury....looking good when you are this freaking sick!

I have just resigned myself to living like Alice in Wonderland. My new normal....just don't rock my boat...they sky is falling.....the snow is burning....hot is cold and cold is hot, and what isn't moving every which way is not!

I don't have a cat, if I did, I am sure it would disappear except for her smile....

You would think that we were living in the "drop-in, drop-out" era of the freaking 1960's... except this isn't any fun, or free... More like, welcome to the bad trip...

By the way, I will be paying particular attention to my three "girls". They do have the Cheshire grin from time to time, or is that just what i see? :D

Mere

Oh wow?
 

I say this because a relative by marriage got 'something' And, thanks to all the info on this site and others? I related to the relatives that well? It mite be an immune thing? And here is the St Louis Univ Site? And this part seems to 'fit'? And it was Sarcoidosis! I do believe they have a better appreciation for my CIDP as well as my learning and memory skills [what's left of them?] as a result. I kept saying don't give up! They had a neuro who did not give up! Bless him? He's in Mich if anyone wants to know... I'm just glad she didn't give up! And better yet? GOT A DIAGNOSIS! That to me? IS THE GOLD!
Mere? The Twilight Zone music is appropriate but the Outer Limits truly is what we deal with when we deal with the medical profession!
Honestly tho? I don't know where neruos and other docs are coming from when they 'say: It mite go away.' Yeah, right, sure, OK, UH-Huh!
Tell me another joke, why not let us into the 'chronic world' gently? W/ resources and therapists who are trained in this, and not those who have no clue? It's kind of like learning how to type all over again!
Hugs to all and to YOUR STRENGTHS! If we were stupid, we'd be worse off? No? But we aren't and we aren't taking being 'down' gracefully!
Find me an ***[the animal], and I will kick his butt! Enough said! :hug::hug::hug::hug:'s -j

Hey J - Do you want to join the Foo club too? You are absolutely right about not taking things 'gracefully'. We do know how that goes. This mess has been going on for far too long now. I am not asking for a cure (as that is too far fetched), just some relief. I am so tired of depending on doctors and the whole rigmarole...

You have a good attitude (as does Cyclelops and many others here). I hope it rubs off on me. And you both make me laugh... Much better than those lousy meds. Except for, maybe, Ambien. That puts me out and makes me oblivious to this mess.

Have you found a little fuzzy yet?

Mere

I think maybe it's that smiley thing they do when they smell something weird. Looks kind of like a Cheshire grin...

http://www.google.com/imgres?imgurl=...26tbs%3Disch:1

Yes, it is called, the flemen... Cats have some olfactory sense that is activated on the roof of their mouths. Mostly to detect other cats' scents.

http://www.youtube.com/watch?v=n1Z6Nz8FuPc

http://www.bestfriendspetcare.com/Pet_FAQs/catscent.cfm

That is your trivia moment for the day, gals! heheheheheheh :smirk:

I notice that they never use this on OUR chairs...only spots where one of the other cats might sit. Tippy who has her spot next to my monitor all day long, will flemen the cushion, if Oreo has been there looking out the window at another time. I know it can't be Sheba because she cannot get up there.

Cats never fail to entertain me!

I have been counting my chickens, for recreation. OK, so my life is sedate.

Of course, they are hatched ones....They are extremely entertaining, but rather ugly at this point:o....I am pondering whether to try to enlarge my flock when I put them in the coop. Hubby says, 'absolutely not'....but what does that matter?! :p I suppose it matters only if we get the dozen or so eggs per day in the Fall....and can't rid ourselves of them.:eek:

They have graduated to the garage now, and have been happily living in a large wooden containment with fan and heat lamp. They roost now. They are feathering out to where you can identify some of the same breed ones now, and their personalities are emerging. I wonder if my ameraucana ones will lay blue eggs? In a few more weeks....out to the coop! Yeehawww!

BTW, I used to have cats...lots of em. I lost my last cat, at age 17, a few years ago. Given hubby is allergic, I have granted him a reprieve from cats....now he is allergic to feathers. I give up.

MRSD, I think I have that weird 'flemen' thing. (Yes, I know that isn't possible unless some ancestor successfully crossed with a cat...eww....let's not go there)

I can smell and taste anything way before any one else has a clue. They could not fit me with a mask for TB cases and told me if I had to work with one, I had to wear one of those huge biohazzard hoods. Thankfully, I retired prior to that. I would have scared the patient to death, and likely suffocated myself in the process.:o

It's either 'flemen' or ESP by smell.

Cyclelops, do you momentary open your mouth and look smiley when you smell. Actually, I have a pretty keen sense of smell too... must be our similar genetics.

BTW, I just love fresh eggs - when they have an orange color yoke. So good.

Mere

I am not sure if I look smiley when I smell. I kind of think I look a bit different....head forward, nose tilted up, lips tight together....sniffffff..........no, not as talented as a cat.....or dog.

I have brown egg layers and BLUE egg layers....as for the yolk....I assume it will be a nice rich gold or orange. My ladies are getting a 'pecking' order now. My husband calls these the $3000 eggs. It cost so much to set up for this.

That's okay. It's fun, it's an experiment.

My niece and her husband live in New Hampshire and have free range chickens. Then "Robert" the Bob Cat came around. He made quick work of "the girls", although I do hear that he didn't get all of them.

Well, I have an electric fence which does double duty as my pacemaker too! No arrhythmias for a week after I touched it. Unfortunately they are back now....badumpdump.

Woe to the predator that comes after my 'girls'.:mad::hissyfit::ranting::mf_swordfight:

All of us with dysautonomia should have an electric fence in our yard. I remember spitting on one when I was a kid - and the saliva was still attached to my mouth. Boy, did I get a jolt! Duh.

My kids still laugh about when they were little and a neighbor watched them for a few hours while I worked. They had a big farm and electric fences. They had a boy about 10 and mine were a few years younger, every 2 years.....

Of course, the older kids could crawl under the fences unscathed. My brood went to crawl under it, following my sitter's 10 year old son, and the oldest crawled under the line, then the next, then the next all made it fine...until the littlest one.....he stood up, right under the line.

BZZZTT... He still has a scar on his head hidden in his hair. We call it his 'electric part'. He is not amused. He was only two! I am not sure who was in charge of watching him, but they didn't do a very good job.

He has always had this odd relationship with electricity. You know those corn on the cob holders, the ones shaped like littled corn cobs with 2 sharp prongs in them to stick into corn on the cob???? Guess what he did with those when he was little. He stuck it in an outlet. He was fine. I was not! Just about had a heart attack. I heard the darn plastic sizzle. Well of course....they looked like plugs, did they not??? Naturally he found the one outlet without childproofing. Lord....and I wonder why my nervous system is shot.

He is 26 now and still gives me new gray hair every week.

That's a funny story. I know the little corn holders you are mentioning. He sounds like a handful. Is he an electrician by chance?

No, he is a luthier.....(repairs stringed instruments)....and makes instruments too. I think he needs to stay away from electricity, lol.

Thanks for the invite to the 'club'?
 

I really don't know IF I've suffered enuf to qualify tho.....
Frightening concept tho, afterall?

Cy? You are beginning to sound ALMOST like 'the Martha' regarding the hens? :yikes:

Mere? Cats are gonna be cats where-ever and not a thing can change THAT!

Flemen? I've always understood it to be a male animal smelling the others in the area to mark their territory or the like. I won't go into the details, as some of it is a bit too basic for sensitives who mite visit this site :o.

Onwards, off to research my own new symptoms. And, await a skyfalling type of thunderboomer between now and bedtime!

Scritch care and love your critters, pay attention to the spouses and the kids and be kind to all others [IF you can]. HUgs and hope!!!! :hug::hug::hug:-j

That's an interesting and unique profession - luthier. I wish I knew how to do something neat like that...

Actually, I did see my female cat do the fleman reaction when she was cleaning her private areas one time. She looked up and made that smiley face. I asked her if she needed some FDS - for that 'fresh' feeling... really, it did happen. I almost blew a gasket at the time.

Mere

I have seen my cats do the smiley thing....never knew what that was. Thank goodness we have bath tubs and showers.

My son also does work with, electric guitars!

Does he do custom acoustic instruments?
Guitars? Banjos?
I've been looking for someone to build me a new
traditional, scooped, open-back, banjo neck.

Unintentional consequences of this disease...
 

As I look back over the past 5 or so years that I have really been battling this disease, I realize it has changed me in substantial ways.

At the most basic level, I take much better care of my body. Eliminating smoking is, of course, the biggie. But I eat very differently and watch like a hawk what I eat and where it comes from.

Portland is a big center for "locavores". We have a store chain (New Seasons if any of you are lucky enough to be in Portland some day) and all of their produce and meat is identified as to the source. The majority of their offerings are organic and I choose them, despite the slightly higher cost. And then there are the farmers' markets where you buy from the producers.

Vitamins. Supplements. Regular physical exercise.

PN may have given me pain which I must wrestle into submission nightly, but it also kicked my butt into taking much better care of this "temple" as it is called in the Bible.

Thanks for reading.

Cowboy

mere, it's weird that you mentioned the frequent urination. I just got on this site, while googling Dr. Khurana, and that is how I happened upon your original thread. But now as I continue to read some of your posts, it's seems like we have alot in common. Just over the past few days, I swear I think I peed about 5 times an hour! I was up all night. It comes out of no where. I also have the dreaded gastroporesis. I have figured out that it is worse when I exercise. I used to walk/run every day, but I had to stop. Dr. Rowe at Hopkins told me to try "Spanx" undergarments and they do help a little, but I still get the dreaded bloat. It's something with my low blood pressure and the blood pooling in my abdomen. My migraines have been a little better, but I am so damned foggy all the time. I feel like I am dizzy, without spinning, if that makes any sense. I see Dr. Khurana on the 22nd and I am counting down the days. I am hoping he can decipher this mess. The one thing I have found that helps a little is "clean eating". When I eat as basic as possible, no additives, preservatives, all natural, organic, etc., I feel a bit better. Certainly not great, but it does help. I also started vyvanse for my low blood pressure (switched from adderall) and to increase my energy and it has helped me to stay awake during the day w/o causing additional headaches. I, too, feel like I am going to die, but as others have said, I have lived like this for over 10 years. And, when people look at me, they always say the same thing, "but you don't look sick". Well, I guess I should be grateful that I look healthy, but it sucks to feel like crap every day. Let me know how your testing goes w/Khurana. I am anxious to hear. I hope you are feeling better.

And, when people look at me, they always say the same thing, "but you don't look sick". Well, I guess I should be grateful that I look healthy, but it sucks to feel like crap every day. Let me know how your testing goes w/Khurana. I am anxious to hear. I hope you are feeling better.[/QUOTE]

This is one of the best and worst aspects of having Neuropathy. You look fine, which when your not symptomatic is awesome. However, when your body is buzzing and shocking and stabbing, and people think your making it up, and that's when it infuriates you.

If you could only give some of that pain to the people around you who think your being weak or crazy, things would change real quick. Why???????.............because they would be on the floor crying like a baby because they have never experienced excruciating discomfort or pain like this. Then they would truly understand the agony and severity of this illness. I think there would be much needed recognition and quicker action if this were possible to do on a large scale.

Hi Tina, Yes, we do seem to have like symptoms. All a result of a wacky nervous system. I usually have this problem of excessive urination with a flare, but have also had urination problems where I have to go but I can't seem to get things going. I just sit there and wait. One way, or the other, it just sucks. I don't know when I will have the testing done. Dr. Khurana's office seems to have their system and they will call. He set an appointment in August to go over the results, so it will be done within the next month or so.

I have been sofa-bound since my flare. Looks like I will be here for a while. I am having trouble doing anything around the house... I am having trouble going up the stairs.

Tina, do the doctors know why you are having dysautonomia? Have you had a skin test for SFN?

Let us know how your appointment goes on the 22nd. I feel that Dr. Khurana is very thorough.

Hope you feel better,

Mere

No clue why I have dysautonomia. And, by all accounts, on paper I look pretty good! In the past 6 months I have seen a cardiologist, rheumatologist, dermatologist, dentist, primary care doctor, gastro, ob/gyn and surgeon! I have had a ton of tests done and the only thing that continues (for the past 10 years) to come back positive is my ANA and when I had my TTT test I was potsy. The rheumy wasn't concerned b/c I really don't have any symptoms of lupus or an autoimmune disease. Cardio - all fine, even my 30 day event monitor was negative. Dermatologist was for lichen planus in my mouth and like most of my strange symptoms they offered me no explanation of what caused it. I had a hysterectomy two years ago and my gallbladder out in December b/c the docs were convinced that was what was causing my severe bloating. Now I know better. But, I only have figured this out b/c I have done my homework. I have even considered taking out all my fillings to get rid of the mercury. I am fortunate that I have a very compassionate primary care doctor who is willing to try anything that I ask her. She also will email Dr. Rowe when needed. I spoke with him once in early January and he was, by far, the most informative physician when it comes to chronic fatigue and POTS/neurally mediated hypotention. I am scared, though, because as I get older it seems like my symptoms are getting worse. I keep thinking that someone will find out that my _______ is broken and they can fix it. I have a hard time believing that I will just need to live with this or medicate the symptoms. My thougths are for all of us suffering from autonomic disorders is that we have a virus or some time of infection or our bodies are toxic. I just wish I knew how to fix it! I hope you find the stregth to get off the sofa over the next few days. I don't think I would be able to move if it weren't for the vyvanse. I think it is the only reason I make it through the day. I only take a low dose and I just added a small amount of prozac (10 mg.) and that seems to help as well. I also take topamax at night for the migraines and either claritan or allegra for the itching. Yikes. I sound like a druggie.

Feel Better!!!

Tina

Tina, I can surely sympathize with your history. My problem started 17+ years ago with tachycardia, trouble breathing, etc. I was tested for everything under the sun (except PN). I was taken to emergency for tachycardia and they diagnosed me with a monoclonal (walking) pneumonia. When the tachycardia and other symptoms did not resolve, I was diagnosed with having anxiety attacks. I now note that I had a total hysterectomy about 3 months prior. Also had my galbladder removed in 1986. With both of the operations they found severe inflammation and scarring.

With time, I developed arthritis and autoimmune symptoms similar to lupus or RA. I am currently treated for arthritis (with Humira and low-dose prednisone- 3 mg) and fibromyalgia/chronic fatigue. I have had all positive pressure points for years. My labs show inflammation periodically, and immunoglobulomenia (?). I have only had a +ANA once and it was not strongly positive. Hence, they shrug their shoulders and treat the symptoms. Something going on but they cannot identify the antibodies.

I was hospitalized a year ago with severe stomach pain and was diagnosed with gastroparesis. I suffered a severe dysautonomic flare then and after my face, head, arm and hand were numb, painful and tingly. The doctors didn't really pay much attention to these symptoms (low BP, fever, severe itching, migraine, urinary problems) at the time. They were focused on the gastroparesis only. I was in severe pain then in my abdomen and required patient controlled anesthesia and then hydromorphone at home for a while. Too much pain for GP - I think the dysautonomia causes severe abdominal pain at times (just my experience over the years)...the Cat Scan was negative.

My feeling is that the viral pneumonia, stress, perhaps some genetics mixed in started this whole mess. Over the years, I have developed the SFN and that was recently diagnosed with a skin biopsy. The dysautonomia has changed somewhat in character over the years, but has not ever completely quieted. I now get the flares that make me feel like I described earlier in this thread. It makes me feel like I am dying, lasts for several days and takes weeks to months to recover from. I also get 'complicated' migraine with the flares. When not in a flare, I still have symptoms of flushing, GP, muscle fatigue, ringing in my ears, pain, blood pooling in my legs and abdomen and general 'unwellness'.

I don't know how this illness will further develop. I don't even know what is causing it. This is the ultimate frustration of many of us here. I am just hoping Dr. Khurana can help. I also have an appointment with Dr. Sumner at Hopkins next week. The appointment was made months ago by my neurologist, so I kept the appointment even though I am seeing Dr. Khurana because it is yet another opinion.

Mere