Found The Cause Of My Dysautonomia And It's Curable!!

[trappedat20]

@northerndarlene I know what you're talking about. I think I mentioned it somewhere on here, but I'm not sure. I had originally thought I had something really wrong with both my neck and my back before I had gotten my x-rays. I don't have back pain that often, but every now and then I get the most awfulllll pain out of no where that would put me in tears.They told me that my back wasn't really a big problem though, but that my neck was really messed up and was causing my problems and I needed to get it fixed. They said I had scoliosis in my back (which I had known), but the curve wasn't that bad,and it wasn't causing me any other problems or interfering with nerves, or really anything that should even be causing me pain. I also don't even have muscle spasms in my back. So naturally I was like *** why do I get the most awful pain than. I experienced that pain again though either before my first adjustment or before my second. I payed really good attention to what was going on this time. The pain started in my neck and it was when my neck was hurting really bad and giving me nerve pain, but I noticed it was pain that started in my neck and was traveling along my spinal cord. The pain in my spine was nerve pain that originated in my neck. It was a burning, stinging feeling. It was a sharp, shooting pain. I had shingles when I was 12 and nerve pain is awful pain that makes you want to curl up in a ball and cry. If I had been paying attention enough I would have noticed it was nerve pain that I was feeling.

Sorry for the backstory, I'm very detailed lol. Anyways, yes I experience that burning pain in my back. I personally don't experience it in my arms, although with the exception of the spine, the arms is one of the most common places to feel effects from nerve pain in the neck. In my case, whenever I start feeling that pain my whole left arm and hand will go numb and I'll get that pins and needle feeling. Also I've noticed in the past that whenever my neck would start hurting more than normal my dysautonomia symptoms would act up more, that was one of my signs that it was originating in my neck. So, if your heart rate speeds up during this pain pay special attention to what else is worse. Take your blood pressure and heart rate, try to see if you feel generally a lot more crappy than you do when you aren't experiencing it as bad. This could be a good indicator on whether the dysautonomia is being effected by it. Although, it was a very obvious change in me. The day I found out I had dysautonomia and started researching more on it I had a feeling it was related to my neck/back. It might not be as pronounced in other people, but the fact that your heart rate speeds up during those burning sensations is a good indicator that at the least your heart rate seems like it's being effected by it.

Also try massaging your neck and see if this helps somewhat. It probably won't help with the pain for that long, but if it temporarily helps while you're massaging it than that's a good indicator that your headaches are probably caused from your neck. When I first started getting frequent headaches in highschool I was able to take ibuprofen for some relief, but when it got really bad around the time I started getting sick nothing would make my migraines go away. They were the type that you'd go to bed with them, and you'd wake up and it was still there. It would temporarily give me some relief while I was massaging it, but a few minutes after I stopped it would return to it's originally intensity. Try massaging the area at the top of the neck where the head and neck meet. That was always the most helpful for me.

I would definitely get that checked out because it sounds like it might be a pinched nerve. I'm not a doctor, but if you are feeling pain in your neck and what sounds like nerve pain in your arms and back followed by an increase in heart rate than it def. sounds like you might have a pinched nerve. I wouldn't rely too much on an x-ray from your doctors office though. They usually can't pick up on whether a nerve is being pinched or not, and they usually don't do it from the side or look to see if your neck is curved or not. I had a feeling my neck pain was connected to my dysautonomia so my doctor ran an x-ray. All he said was that my c-4 was starting to twist and I had a degenerative disc that MIGHT be pinching a nerve. He couldn't tell me for sure because most doctors aren't trained to look for pinched nerves and stuff in an x-ray. An x-ray from a GOOD chiropractor should be able to tell you because chiropractors are trained to be able to see that stuff. They have to learn a lot about the nervous system and how it's related to the spinal cord and brainstem. They need to know this stuff in order to unpinch nerves and to avoid damaging anything. An MRI should also be able to tell you what's going on. I've never had one done but from my understanding anything going on with your neck should show up on an MRI. If there is anything this whole thing has taught me though, it's to not ignore that type of stuff. Pain is your body's way of telling you something isn't right. Good luck! Keep me updated.

[trappedat20]

Oh yeah and I think my blood pressure and heart rate are starting to level out I've been getting a normal reading the past few days while sitting, which is good because a lot of the time even my sitting blood pressure is all over the place, but it still doesn't tell me anything, so I decided to put it to the test. I cheated a little bit because I stood up to get the blood pressure machine (from a few feet away) before laying back down, but I waited 2 minutes and I really don't think it made a difference. These were my results.

Laying: 125/77 heartrate 120

Sitting: 117/ 70 heartrate 120

Standing: 143/83 heartrate 119

After going down the stairs: Tried 4 times but couldn't get a reading. Even up to 4 minutes after going down the stairs. This is typical though. My pulse pressure gets too low a lot of the times when going down the stairs. In fact most of the reasons I pass out is because of a low pulse pressure, and not a low blood pressure necessarily.

After going up the stairs: I didn't even take this because I couldn't get a good reading going down the stairs so I didn't expect much out of it.

But wow my laying/sitting/standing have definitely evened out to what a normal persons would do.

Here is a copy/paste from my first thread where I asked questions about completely unstable blood pressure for comparison.

"Here's an example of me taking my blood pressure a few times today.

2:41pm: 108/81 heartrate 112 (sitting)

2:43pm 145/127 heartrate 41 (still sitting)

2:45pm: 110/95 heartrate 96 (still sitting)

2:46ppm 124/87 heartrate 118 (still sitting)

Yes, those are real numbers only minutes apart without me moving. It's not my machine, or me moving, or anything. I feel the effects when it goes to extremes too.

I tried to do the tilt table test on myself the other morning

Laying 15mins: 106/75 heartrate 104

Standing 1 min: 100/76 heartrate 138

Standing 2min: 113/80 heartrate 122

Standing 3 min: 100/62 heartrate 104

Standing 4 min: 97/69 heartrate 90

Standing 5 min: 94/75 heartrate 127

That didn't really tell me anything interesting. My blood pressure didn't get lower and lower or higher and higher, and my heart rate just kept jumping around for no reason and so it didn't even stay above 120bmp for a POTS diagnosis.

I took my blood pressure at different positions the other day

Laying: 71/52 heartrate 79

Standing: 101/80 heartrate 120

After walking down stairs: 97/67 heartrate 88

Those were all right after the other btw. It makes no sense to me why my heart would go down after walking down a flight of stairs but my body does a lot of things that make no sense.

Later that same day

Standing: 112/97 heart rate 158 (I was experiencing pre-syncope and felt like passing out so I kept taking my blood pressure and after I finally stopped showing Error this is what I got. Btw it shows error for me a few times a day because my pulse pressure will get really low. I know this because it only shows error when I feel faint and when it finally does give me a reading my pulse pressure is low.

Going upstairs: 151/96 heartrate 91

Sitting: 123/100 heartrate 80"

So, yeah it's definitely showing signs of improvement. Before my blood pressure was completely unstable and made no sense. Now it seems like it's starting to even out. Although I will keep testing myself to make sure it's still improving. So not only is it starting to seem more stable, notice in the past test it increased 34 beats per minute from standing, but today it went down 1 beat (so it practically stayed the same.) I will keep testing to let you guys know how things go.

Oh and once again I don't have POTS. I just have dysautonomia and vasovagal syncope. My heart rate and blood pressure were always too unstable to be diagnosed with POTS despite having literally all of the symptoms. My blood pressure sometimes went way up from standing, sometimes went way down, and sometimes stayed the same. It all depending on what it felt like doing, so no POTS.

[yogini]

I have a lot of trigger points on the right side my neck and shoulder. When they release they cause radiating in pain, tingling, burning and other symptoms in my arms and back (and elsewhere in my body). Dysautonomia causes low blood flow to the neck and back (and to the head, which causes migraines). Low blood flow can cause trigger points and migraines. It is hard to know which came first. the chicken or the egg, and we are all so different. It is all very complicated!

[trappedat20]

Update: Sorry I haven't updated in a while guys. So I've actually felt worse this week. Last week I felt like I was getting better, but my last 3 adjustments made me feel worse. My chiropractor says that the first three months will be a roller coaster for me with me having some days that I feel like I'm cured,and some days where I feel like I did before I even went to the chiropractor.

My brother in law and husband were saying the same thing, but I just wanted to make sure. He said while the bones are moving they will be closer to nerves on some days than others and stuff. It makes sense because my neck has such a long way to go that it will run into things on it's way to the correct position. I'm kinda disappointed because I got myself all excited thinking it would be all uphill from the first one, but I'm just glad that everything is okay. I had nerve pain the last 3 days, and my migranes came back. I've also had weird neurological things that are a little different from my usual. Like ever since yesterday my teeth keep chattering like crazy for no reason every once in a while. I'm not even cold or anything they just start chattering uncontrollably. I had trouble swallowing my food last night. Yeah, kinda weird as I've never had those neurological symptoms before.

Ever since my first adjustment my husband has been saying that I will probably experience weird neurological things while everything's moving around. I've been in bed all week. Didn't even go to the gym at all this week cause I've felt lousy, especially with me getting the migraines and nerve pain every night (ugh.) I knew the first 3 months would be the most difficult though and where most of the improvement would happen. I have now had 8/72 adjustments. They re-did my coordination test and said I was a little better. In 10 more adjustments I get to have my neck x-rays! I'm so excited. I can't wait to see if there is any progress.

-MakeMeErised

[IceLizard]

My experience:

My old chiropractor also said I had a straightening of my curve that was pinching my spinal cord. So, I let him adjust my neck. But the adjustment made me feel so dizzy and like I was on the verge of losing consciousness. It frightened me. It also increased my pain. So, instead I went to see a rheumatologist who disregarded what the chiropractor had said and told me my neck was just fine. I am confused about who is right, but I do know that adjustments of the neck can be dangerous: they can cause damage and even vertebral artery dissections.

Be careful.

[trappedat20]

@IceLizard I was actually looking up vertebral artery dissections the other day. While I do know that what he is saying about my neck is right because of a previous x-ray with my doctor, and feeling the back of my neck, I am a little concerned. What he says about me having some days when I'm better and some days when I'm worse makes since, but I'm still going to be careful and watching out. I would be more concerned if I didn't feel better at first. Right now I'm just waiting to see when I feel better again to see the validity in the roller coaster statement. Hopefully soon. I'm definitely keeping an eye on it though because my neck is really messed up and I can't risk it getting worse with all of the things that are being compressed. Thanks for your concern

[trappedat20]

Update: No good news 3 weeks out of 9 months down (11/72 adjustments) and I don't feel better. The first week I started to feel a little bit better, but the past 2 weeks I've felt almost as bad as I normally do. I know it will take 3 months to see a significant difference, but I feel like i'm starting to lose hope. Money's tight and since I'm suppose to get better I was looking at jobs I can get that require an AA, and looking at going back to college to get my AA. I need to apply really soon if I want to make it for fall semester, but I can't do that if I don't know if I'll get better or not. It's hard to even re-evaluate my life and see what I want to do when I don't know if I'll be able to get a job that requires standing or not. Feeling really frustrated. Wish me luck that next week provides better news. My migraines and sensitivity to light and sounds went away for the most part, and my blood pressure/heart rate seem to have stabilized somewhat so I don't even know what gives. The disabling fatigue is still there though and I still get dizzy and feel like I'm going to pass out, and sometimes do. I still feel like I'm going to have a heart attack coming up the stairs, my vision is still off. There's more symptoms I'm missing that are gone, and more symptoms I'm missing that are still there, but I feel like the most disabling ones are still there. I still get the horrible nerve pain every now and then too. I still feel like it's my neck, but I can't wait to get my x-ray done because I want to know how much better my neck actually is because it still feels like it's in the same spot (granted 3 weeks isn't exactly going to move it back into place so maybe i'm being impatient.)

[trappedat20]

Update: I started to feel a little bit better again this week. Yay. It is a rollercoaster I guess. So, apparently it's a 12 adjustment evaluation and not a 16 adjustment evaluation like I thought. So we took my x-rays again and I got a 9/10 on their progression scale. The arthritis and degenerative disc is still there (it's only been 3.5 weeks.) The torn ligaments healed though I'm excited about this because I've been waiting for this so that I could do shoulders at the gym. I haven't been able to do things that work the shoulders because they also put too much pressure on the neck and it would hurt too much, and then I found out it was torn so I had to stay away, but now I can do all forms of weightlifting at the gym. The curve in my lower back is now as straight as an arrow, and the curve in my upper back is still there but almost straight. So it looks like by my next evaluation my back should actually be fine Now on to my neck. They said it moved a lot although it didn't look like a lot to me, although I guess they meant a lot for only 3.5 weeks. I could see that my neck moved but it's no where near where it's suppose to be yet. I have 8 more months though so I guess that's explainable. Something nice though is that it's starting to curve a little bit (in the right direction) up where my brainstem is, which I'm guessing is why I feel a little bit better. The migraines and blood pressure issues were caused by the pressure on the medulla oblongata and now it's taken some pressure off of it, so that's probably why those are almost stable. I got my at home kit yesterday which includes about an hour of stuff I'm suppose to do a day and it's suppose to make a big difference. I'm regaining hope again. Last week my hope started to disappear, but this gave me some hope I do feel back to how I felt the first week again which is nice, like he said, a rollercoaster. I'm not even sure if anyone is still reading my updates anymore, but here ya go. This is close enough to the 1 month mark. I have one more adjustment this week (it will be 13/72) and that will be about 1 month through treatment (4 weeks.) and I had my first evaluation. My husband and I are giving it 3 months to see if I have significant improvement. I really hope I do!!

[BeforeTheMorning]

Yay! I'm so glad you are feeling that bit better again. It sounds like you are seeing quite a lot of improvement for only your 12th adjustment out of 72! Hope you continue to improve.

Lyla

[trappedat20]

@BeforeTheMorning Thank you Yeah after the first week I got a little too hopeful and thought it would be smooth sailing from there. Than the second week I felt crappy but my chiropractor told me it would be a rollercoaster the first 3 months and so that made me feel better. Than the third week I still felt crappy and started to lose hope. So glad I started to feel better again this week. I guess he was right that it would be a rollercoaster with good weeks and bad weeks during the first 3 months.

[Elish]

I am so happy for you! Please keep us up to date, on your progress!

[trappedat20]

Update: 5 weeks complete and 17/72 adjustments completed. I don't know how much I'm going to update anymore. Maybe just when something interesting happens. I lost my doctor and am looking for a new doctor and so I am out of my adderall. It unfortunately takes forever to try to get a doctor to prescribe you adderall here because I guess in Tennessee they think everyone's a druggie. It's extremely annoying to me how hard it is to get on my medication because it's a controlled substance. I wish that something helped me that wasn't a controlled substance so I didn't have to jump through hoops to get it. It was a lifesaver for me for helping my ADHD-Combined type, but then we realized it was helping my dysautonomia too. Now I feel like I'm going through a lot of unnecessary ** while waiting forever to get into my appointment to get on medication. It's really hard trying to find another doctor to prescribe it here so I'm having to go through a psychiatrist. Which made me go to an intake appointment and now I have a month wait to get into another appointment that's going to have a drug test and stuff (and I still might not get my medicine that day) to get back on my medication. Completely ridiculous. I need that medication to function and I'm feeling pretty useless right now waiting to get back on it. Granted I'm feeling better than I was before when I didn't have my adderall. Before the adjustments when I didn't have my adderall I was completely on bed rest and unable to get out of bed without passing out. I'm nowhere near that now, but still pretty useless. I'm very upset because things were looking up for me and I was trying to work myself up to doing new things and now everything's all screwed up because I can't see my old doctor anymore.

Sorry that I have no news on the adjustments. It's really hard to measure progress now when I'm not on my medicine.I'm thinking my next update will be the 2 month mark and I'll update monthly for now on. There's not enough happening on a weekly basis to keep updating weekly, and without my medicine it's really hard to tell anyways.

[RichGotsPots]

Like Rama, I am skeptical. There are a lot of alternative doctors out there with great intentions and impeccable bedside manners. But they try to use placebo to cure people. They pump you up, tell you they know whats wrong and they can cure it. Placebo is very powerful and it can cure anything even cancer, but it won't work for everyone. It's just your mind healing your body. So I am hopeful it works but it's not a real cause or a real cure everyone can use.

There is such a thing as a Chairi Malformation and there are spinal trauma's that can damage autonomic nerves close to the spine.

Wish you luck!

[trappedat20]

I appreciate peoples honesty. I'm not even sure anymore. I had another evaluation and it's going back into place slowly but it's starting from the bottom up, meaning it will take a while to take all of the pressure off. I will say on my good days when I don't feel the pressure on my brainstem I feel about 90% better (that's also when I'm on my adderall too btw though). When I feel the pressure on my brainstem is when I'm really sick. So when the pressure is finally off of my brainstem I should be at least 90% better, but for some reason even when I don't feel the pressure the fatigue is the one symptom that won't go away. It's the most disabling, horrendous fatigue that only people with chronic illness understand. I can't even describe it but for some reason that hasn't lightened up at all even on my good days. I'm wondering if the fatigue is caused by something else. I get enough sleep, great nutrition, my thyroids fine, no anemia, no depression, and so I don't know what would warrant such horrible fatigue where walking anywhere feels like too much. I'm wondering if the fatigue wasn't part of the dysautonomia because I have had a few good days where that was my only symptom and even my bp was checking out normal. So, I don't think it's a placebo. It makes sense that pressure on my medulla oblongata (which I can feel) would make me sick, but I don't understand this fatigue. It feels unrelated now which is confusing considering how bad it is.

[Tuesday]

I would not rely on Chiropractic to cure, or even help, anything. You may want to consider doing additional research into its (lack of) scientific validity.

http://www.sciencebasedmedicine.org/the-end-of-chiropractic/

[trappedat20]

It actually already got rid of a few things completely. It got rid of my nerve pain, migraines, and sensitivity to light and sound. My blood pressure/heart rate is a lot more stable now than it used to be also. While it's not working at the rate I want it to be, it IS working.

[Gemma]

I tried chiropractor as well, but didn't really help my symptoms. Lately, like past 3 month I started feeling better over all and have on and off flares. So, maybe what you are feeling is on and off flare of symptoms. A lot of people here say they have windows where symptoms improve and then have a flare. I was feeling much better last 3 weeks, but now this past week feel really bad. I am hoping it is one of the flares. Before I was like this every day, very fatigue to the point that I could even make breakfast for myself, severe lightheadedness, fogginess, feeling like its really hard to stand and need to lay down to relieve the symptoms. I also, felt really bad head pressure, like not enough blood flow to my brain and wanted to lay down to relive this symptom. Also, sometimes I feel like the blood is collecting in my abdomen and not going back to heart and brain. It is a very deliberating condition. I also do not know what else to even try. Different meds made me feel even worse. I also, tried osteopathic doctor who did manual therapy on me, but it was too expensive, like $180 per session and I could have afforded only 3 sessions. After manual therapy I thought i am getting better, my fatigue started to improve, as well as my lightheadness. However, at the same time as I did therapy, I got off xanax, and I think a lot of my symptoms were from xanax use. So, I cant really say if therapy helped or stopping xanax.

I currently take no meds at all because those that I have tried made me even more sicker. I also need to return to school in May, and I have no clue how I will be able to manage it. Its a graduate program, so very hard and with this condition its probably will be impossible.

Hope you do improve and chiro helps, but be careful.