New Here And Just Want To Introduce Myself

[all4family]

Hello everyone,

I'm new on this board, and relatively new to knowing about dysautonomia. About 4 and a half years ago I became sick. (I have learned to say that because trying to explain how I became sick takes to long. And no one ill sit there that long!) After a bout of waking up with extremly high blood pressure 186/112, numbness down one side of my body, and very heavy pounding in my throat, I drove myself a half hour to our local ER. Where my BP was taken again. Still the same. Two nurses stood on either side of me while they prepared a room for me. (I now realize they were waiting for my heart attack, or stroke which never happened) By the time the night was over my bp had returned to a much more normal level, but still high for me as my bp had always been very low. usually 90/50 to 110/60 max. I didn't know it at the time but this would turn into a almost 5 years now nightmare.

The next day at a regular pcp visit, it was a nurse practitioner which I think was fairly new. I asked the question "Could this be from anxiety?" Well I don't think so, but I will give you these, just take them whenever you feel bad, and it takes all youre cares away. I took those home, with a beta blocker and instructions to take an asprin a day. Now remember I usually have low blood pressure, and this was a fluke thing in my opinion. But never the less I took these medications home, and the next day began taking them when my blood pressure bounded up again. This time not nearly so high. After taking all these new medications I laid down in bed for 30 minutes, upon which time I sat straight up in bed, clutched my chest which was exploding, and had my husband rush me to the hospital. This continued on changing medications, being told to call 911, then being told not to abuse 911. having a racing heart of over 170 and an eratic blood pressure. When I realized the medications were causing most of the problems we found one that seemed ok for my "self diagnosed anxiety" wish I had never taken it. after about 6 or 7 months on it had lost 120 pounds from vommitting 50+ times a day on most days. A good day was about 20 to 30. Was now told I was anorexic! Anyways. Not trying to make this a long story. I got off the medication, and slowly began improving. I never did return to how I was in the begining, but was hopeful. At 3 years off all medication I had to have some dental work done. Having found out with my testing that I had an aortic valve insufficency I had to take an antibiotic. So I took one, and had the numbness. went to cardiologist was given benadryl. went home half my body had swelling in strange places including my ear which was diagnosed as an ear infection. Although this doesn't explain the swelling on the rest of my body. took ear drops, and by this time was back to how I was in the begining which was very sick with eratic heart rates and blood pressures. vommitting losing weight, visual and speech disturbances, and the list goes on and on. It was only made worse with the testing that was done. Hand ct with dye and stuff for "allergies" had mri with gadolinium. made my muscles so rigid I couldn't move and could barely breath. Once again Drs could find nothing for a diagnoses, and were trying to say I was crazy again. So I went to a specialty hospital where they ran a bunch of tests on me. There we found my electrolites were very dysfunctional. low potasium and magnesium. Had secondary hyper parathyroidism. So walla! I would take some vitamin D, and other stuff, and I'd be better. Went home happy to have some answers....until

A couple days after my last apointment my GI doctor called me and said do you remember I was running a test on you that tests for antibodies to cancer and tumors? Called paraneoplastic syndrome? Well you tested positive for it. She then started explaining that I would need to see a neurologist, and have further testing done. I really can't remember everything she said but she did say it would explain my passing out episodes. I don't know if it explains my abnormal eegs though. So I hung up the phone, and realized I didn't know the name of this thing. I looked up everything that sounded like paraneoplastic syndrome, and was horrified by what I found. I called back, and they said that is just one thing that this test tests for. That is why we need the neurologist to evaluate you. she gave me the name of the test which is ACHR.neurol.gangl.AB. So looked that up. Didn't like what I found there either. All about paraneoplastic syndrome. I knew she said it is a nerological autoimmune disease, so I looked those up. Thats when I found information on dysautonomia. I started reading this and realized this is exactly like me. I had a few months to wait for more testing due to insurance. I did get paper work during this time. Which listed as posibilities for this test were :dysautonomia, some delayed gastric emptying thing, and paraneoplastic syndrome.

Well I waited my time to go see the neurologist, and just went this last monday. I guess he noticed I had some problems with my speech, which really is frusterating to me. (I had a friend of my 12 year old daughter ask me if I wore a tongue ring. I don't) I was scheduled for speech pathology therapy visit, autonomic reflex screen, and a video swallow as my high resolution ct scan showed a dialated esophogus which they said goes with the delayed gastric emptying, and dysautonomia. I did a breathing test which was ok except air trapping, and the fact that after all the intense breating I fell out of the booth and almost passed out. At the end of this test she hooked me up to a pulse oximeter which I knew would be interesting. I began going very slowly up and down a step, which my hr almost instantly started climbing. in less than 30 seconds I was at 135 then 139 where she determined my oxygen was ok, and I should stop. I know on the ars test one part is the tilt table. I have a hr watch at home, and have done laying and standing hr. It is usually in the range of 58 to almost instantly 112 108 etc. (it's not a continuous running one) but there are times when it doesn't do that. Or when it goes high, but comes back down to 90 or so. I really don't want to take any medication as I have severe reactions to most, and am worried my heart won't do it's usual. I have taken nitroglycerine before (on one of my many trips to the hospital) and although I got a migrain my problems didn't last for months or years after having taken it like with some other stuff. I am very worried they will give me the medicine on the tilt table test, and will be sick bad (almost completly bedridden) for another year.

Well I said I didn't want to make anyone listen that long, and look at all I wrote. I am sorry. Believe it or not that was my shortened version. I tend to be long winded, and due to being sick can't do that outloud anymore, but still can on a keyboard. I appologize for the length of this.

Best wishes to everyone on here for all they are going through, and I hope that someday there will be a better solution for this horrible life robbing illness. If anyone has any advice or suggestions for me they would be appreciated, as I have only learned about dysautonomia a couple of months ago.

healing hugs to all , and thank you for listening, Suzy

[janiedelite]

Thanks for telling us your story! We are all somewhat different, but in a lot of ways the same also. Especially in regards to the emotional struggles with dysautonomia and dealing with this disabling illness.

I haven't had a tilt table yet, but can they do the TTT without giving you meds?

I laughed when you talked about previously being "long-winded." I am short of breath just talking on the phone! But this forum gives us a good outlet.

[all4family]

Thanks for telling us your story! We are all somewhat different, but in a lot of ways the same also. Especially in regards to the emotional struggles with dysautonomia and dealing with this disabling illness.

I haven't had a tilt table yet, but can they do the TTT without giving you meds?

I laughed when you talked about previously being "long-winded." I am short of breath just talking on the phone! But this forum gives us a good outlet.

Thanks for asking. I am hoping they won't give me any medication, but I really would also like an accurate test, and know that if it is not positive something is wrong. I just know I will go in for the test, and it will be the one day of the week I feel great. But I guess either way we will have to keep looking, because there has to be a reason for the positive antibody test.

I'm glad to know I'm not the only one with the phone issue. I find myself yelling because I have no voice at a lower level, and it is exhausting. And to think I used to sit on the phone for hours and talk about nothing! Now people think I don't want to talk to them, but I just can't. I also lose my voice all the time. My kids laugh so hard at me and call me minnie mouse! Do you get this? (the voice not the teasing..haha)

thanks for sharing hope you have a good day.

Suzy

[EarthMother]

Welcome to the boards. Sounds like you have a very complicated situation.

As for the TTT, I have had a couple of these done and REFUSED the injection each time. In my case, (you can see from my YouTube video under "Demonstration of Dysautonomia) I have textbook POTS and my heart rate goes up just fine all on its own. Both of the Doctors performing the tilt tests agreed.

Good luck on your healing journey.

~EM

[all4family]

Welcome to the boards. Sounds like you have a very complicated situation.

As for the TTT, I have had a couple of these done and REFUSED the injection each time. In my case, (you can see from my YouTube video under "Demonstration of Dysautonomia) I have textbook POTS and my heart rate goes up just fine all on its own. Both of the Doctors performing the tilt tests agreed.

Good luck on your healing journey.

~EM

Hi there,

I did actually watch your video, just yesterday. Then came here because of your video. Although I had been here before I decided to join yesterday. Thank you so much for making the video. It helps people so much as we are learning about these diseases we have to be able to learn more about them. I don't think I have "textbook pots", although my hr does climb usually about 50 upon standing. But I have such a huge list of symptoms that it would make any Drs head spin. But my hr does come back down a bit sometimes. Never to where it was when I was laying though. I don't think they would have a problem with me not taking the meds as I have really demonstrated more than once a complete intollerance for medications. Does it matter if after your HR goes up say by 50 or 60 if it comes back down say to 30 or 40 above your resting one? then back up again? I guess I would just like to take these tests, and be done for a while. Maybe learn something to feel better and get back my previous life at least a little. Anyways thank you.

healing hugs to you

Suzy

[mountainsunflower]

Hi, I had a TTT and they did not use meds. I didn't even know they used meds during at TTT until recently (and i had my TTT in 06) Also, i have had crazy heart rate fluctuations like you are talking about where it goes up really high then it might plummet. Most of the time it will go from 80 at rest then within 10 minutes of standing it will go up to 120 or more... classic pots as my doctor calls it- like earthmother- testbook

And as for meds in general- i think it is pretty common with dysautonomia to have drug sensitivities- i know i have many sensitivities to drugs along with horrible allergies- during a lot of my allergic reactions my ears fill with fluid and could become infected... it is an odd reaction because i don't get the normal red, ichy eyes and sneezing and such... just full ears, drainage, and cough.... so i thought of that when you were talking about your ear incident.

take care and welcome

[all4family]

Hi, I had a TTT and they did not use meds. I didn't even know they used meds during at TTT until recently (and i had my TTT in 06) Also, i have had crazy heart rate fluctuations like you are talking about where it goes up really high then it might plummet. Most of the time it will go from 80 at rest then within 10 minutes of standing it will go up to 120 or more... classic pots as my doctor calls it- like earthmother- testbook

And as for meds in general- i think it is pretty common with dysautonomia to have drug sensitivities- i know i have many sensitivities to drugs along with horrible allergies- during a lot of my allergic reactions my ears fill with fluid and could become infected... it is an odd reaction because i don't get the normal red, ichy eyes and sneezing and such... just full ears, drainage, and cough.... so i thought of that when you were talking about your ear incident.

take care and welcome

Thank you so much. I am glad to hear that. There are a lot of tests I wouldn't do due to the meds. I have waited for 5 years for a "diagnoses" that explains all my symptoms together. Not that I really want a diagnoses of anything, but it sure would be nice to understand whats wrong. Would relive a lot of "what ifs" of not knowing. Like "what if" lung cancer as that is common with the paraneoplastic syndrome. And I know for a fact I have issues with my heart rate and blood pressure being very erratic. like VERY high, and VERY low. And my local Drs would tell me either when it was low...76/38 (and trust me I was feeling very bad) they would say it was a error with the machine. Even though I took it 3 or 4 times.And when paramedics couldn't get a blood pressure they would just keep taking it untill they gave up and told them at the hospital they couldn't get one. I was told if it was that low I would be dead. Or if it is very high h/r (I love this one h/r of 170) well you must just be anxious, since you've been here (laying down) your h/r is fine. In fact it is so good I wish mine were that good. (Trust me I wish it too.) So this test really does mean a lot to me. It means the difference between me getting local medical care or Drs who just think I'm anxious and making my h/r and b/p do that. I even said to one Dr who said we all know why you are here (after passing out on my face in a large crowd). And I said back to him so you are telling me that passing out is from anxiety? He said with you yes. So I have special medical rules made up for me. I feel so special!

As for the meds. That is very reassuring to know. I was told I couldn't be allergic to everything. And really coerced and (I hate to use the word but it was what happened) threatened into continuing to take medications. Even though I had horrible all over body rashes vommitting that started with the medication, and eventually stopped without it. They would just tell me I was "afraid" of taking the medicine. I didn't know fear turned your urine brown, and made rashes. And I would tell them I am just very sensitive to medicine. But they would tell me you can't be sensitive to everything. In the hospital someone was injecting nausea medication into my arm, and I could feel it burn all the way in. As I felt it burn my heart started racing and the moniter that I was on took off beeping. I asked what she was giving me, and she said I needed to calm down. I was way too anxious about getting medication! But she called another nurse in while they both made themselves look busy, but were really watching to see if my h/r would come back down.

I had told my Dr about the swelling and she couldn't help me for 2 days. and if you've had an ear infection you know how painful they are. I couldn't sleep for 2 nights. and by that time all the other swelling was gone. But my ear was swelled completly shut. They couldn't get an odoscope in it. So the diagnoses of ear infection was made solely on the basis of the severity of the swelling. It's really nice to know that all these symptoms that I have been told for so long were in my head other people have. Not that I am happy for anyone being sick. But I became a shut in for 2 reasons. One just being unable to do almost anything, and two not being able to get some help for my symptoms I just decided to hide them. I began to lie to the Drs. and told them I felt fine. (didn't want to be accused of being a hypochondriac) And lie to everyone in my life. I would tell them I was just tired and healing.

I went on and on again. I am sorry. I guess it just feels good sharing these things. Thank you for the support, and just a place to vent this stuff.

healing hugs

Suzy

[Megan]

Suzy,

Just wanted to say "hi" and that I hope you get some answers! Also, I did not have meds with my TTT. But hang in there! You may have to push a lot but there's gotta be something that gives you at least a tiny bit of relief.

Meg

[all4family]

Suzy,

Just wanted to say "hi" and that I hope you get some answers! Also, I did not have meds with my TTT. But hang in there! You may have to push a lot but there's gotta be something that gives you at least a tiny bit of relief.

Meg

Meg,

Thank you for the encougagement. I feel a sense of relief after so long of just not knowing why I felt that way, and feeling like I am the only one. I have been reading on here what others go through, and I finally feel like I am not all alone. I am glad that there are people who have had the tilt table without the meds. The Dr didn't say anything to me about meds, and knows I have some very serious problems with them, so I am hoping it will be without. Either way I will probably just ask not to have any. Seems it can be diagnosed without it.

healing hugs

Suzy