Hi From Old Member

[all4family]

Hi to everyone! I am a member who came to this site in 2008 when I first found out that I may have autoimmune dysautonomia. I used to come here often and always found so much support and compassion. I have seen quite a few names here from before that I remember, and it is good to see you all again. Wish under better circumstances. I learned a lot in dealing with my illness from here, and was well on my road to recovery....I would even say I was 80 to 90 percent better. Until recently I became dehydrated from working outside in the heat, and had a couple other things happen, when wham out of the blue ended up in the same boat I was in a while back. So after 2 weeks of denying, and looking for what else might be wrong with me it suddenly hit me today. I bet this is a flare up of my dysautonomia. So here I am reading and catching up. Good to see old friends, and hi to new ones I haven't met yet!

[sue1234]

I hate to say this, but, welcome back!! I'm glad you had a little time off from this. Any idea what helped you get to that 80-90% before?

[all4family]

Hi Sue, and thank you. I believe most of it boiled down to one big thing for me, but it was also a lot of other little things I did. When I first got sick one of the tests that came back abnormal for me was a pinched nerve in my neck. Or so I thought thats what it was. I always had a very tight neck, and I had this internal need to always crack it in the direction it needed to go. And it wasn't like a chiro crack it would get so tight I could barely move, then it would crack so bad people could here it in another room of my house. Well it started to crack a lot, and I noticed a pattern of it cracking, me getting better, then worse, then a lot better. I went back to look at my paperwork from the "pinched nerve", and when I read it again I was kind of surprised to see that it said I had spinal cord compression. Which is why the first doctor reffered me to a neuro surgeon. Well I did have another neck crack just before I got sick again, and it was a big crack and different then the ones before. So I am hopeful if it is like the ones before where I get better worse, and better again, and the better just hasn't come yet. I also read a book your bodies many cries for water, and really forced myself to drink enough water, even when I didn't feel like it. And there were a lot of times I didn't want to drink, it would nausiate me, and I would drink a little at a time until I could drink more. Well I worked out in the sun and did a lot of running (something I wouldn't have done at my worse.) and the funny thing is I can only drink very much water laying down, so I try very hard to take water breaks to make sure I stay hydrated. So when I was so busy working I didn't take enough breaks, and although I still drank water it wasn't nearly enough. So what it boiled down to for me was my neck, and resting when I needed to, and making sure I got enough water. With salt. Sorry I don't have a better answer. I know we would do just about anything for recovery, but that is what worked for me. I became a very natural person through all this because the medications and dyes and everything else that was used made me so sick. that also helped me. I hope that this can help you somehow.

Suzy

[jlmahon]

I also have autoimmune dysautonomia. Mine tends to flare up for a month or two at a time, and then get better sometimes for a good few months or so. Even though mine is autoimmune, I've noticed I get symptoms (fast heart rate, low bp) from getting overheated. I try to spend very little time in the heat, and make sure I have lots of salty foods and fluids on hot days when I know I will be outside longer. Funny you mention, but I've often wondered if chiropractic treatments have helped me as well. My neck used to be so stiff and sore, and as soon as that got better, so did my symptoms. I also have RA, so not really sure. I took methotrexate and prednisone for the RA, and I think that might have helped with the dysautonomia too. I hope you feel better soon. Are you on any med treatments?

[all4family]

Hi Hanna,

Did you also have the antibodies to the ganglia? I have luckily had longer and longer stretches of doing well, which I can't say enough about. Sorry yours flairs up so often. When I was first sick it was 24hrs 7 days a week no relief for probably the first 3 years. I actually just came from my natural Dr today, who specializes in something with the bones etc. but not just chiropractic. When I gave her all my medical records she looked at them, then I handed her the one where my c-4 and c-5 were compressing my spinal cord. It was like a light went off in her head, and she told me everything I am experiencing now ties into that. I was never so happy in all my life, because I knew there was a connection. and the fact that my neck injury happened just before I got sick, and this time I also "cracked" my neck which may have triggered my sudden rush of symptoms. She is starting me on traction for my neck, and also some neck exercises, so that when my neck goes into place it will be stronger and stay there. I don't take any medication. I am missing a gene called cyp2d6 that metabolizes drugs, and have had multiple problems with drugs. I also have had positive tests for mast cells, and due to this they thought the best course for me was natural with salt and fluid, which I couldn't of agreed more. I am glad to hear that the improvement of your neck also improved your health. It would make sense that the autonaumic nervous system goes through the "nerves" which travel these pathways.

Suzy

[HopeSprings]

Hi Suzy. Sorry you find yourself back here. I had a neck injury shortly before my most dramatic dysautonomia symptoms started and compression of the cord at c5/c6 and something (forget what-bulging disk?) at c6/c7. Do you have herniated disks or what happened with the neck? What did the neuro-surgeon say about it? Not sure I understand the correlation with the autoimmune dysautonomia. Seems like this would be a separate issue? I keep going back to my neck, but it's impossible to find a Dr. to have a conversation about this with. Please let us know if addressing the neck does anything for the dysautonomia symptoms.

[LMG]

I too had a neck injury (whiplash) a couple of months before POTS/dysautonomia onset. Now, several months into illnes, I have a lot of neck pain and headaches. Xray shows compression at C5 and 6 and pinched nerve. I had always gone to a chiropractor but my last adjustment was Oct 2011. Felt like that one really kicked me into bad POTS.

I know I have to have some treatment for my neck but also can't get any good medical info, as Naomi stated above.

I have tried Physical therapy, and am wondering about injections...

Any info you all post would be of help.

[all4family]

Hi Naomi and LMG,

I have been looking for a neck connection with my illness since it started, because the symptoms started very soon after I had side to side whiplash, and as time went on were relieved by my neck "cracking" which by the way is something I do because my body tells me to, not because I am trying to fix it. I did go to a chiropracter once in the beginning of this, but he did a quick crack which he was able to do on one side, and then tried 3 times on the other side with no results. That ended up being not such a good thing for me, so I quit going, but never stopped looking for the connection. I found a chiropracter on you tube a while ago that explains a lot of how our body and our nervous system is tied in with our spine. He says c-3 c-4 c-5 keeps you alive. I don't believe having my neck cracked by force by a chiropracter is the way to go for me, and won't have an adjustment like that again, but I do believe there are different chiropracters and such out there that don't work by doing a sudden crack on your neck. I know there is some that work slowly with gravity etc. to get the desired effect, which is what I will be doing. I will be doing traction and neck exercises. This is a nice slow way to work on it so as not to shock my body in anyway. Also as more days pass and my neck heals from the last crack, I am feeling once again a relief from my symptoms, and am even looking forward to hopefully some improvement. my neck cracks because it is ready to. Not because I go in and have an appointment to get it cracked. It gets tense I stretch it, and it cracks. I promise I don't throw it and try to crack it. It is just a simple stretch that makes it crack. I hope everyone can find a solution to this because I know how hard it is to not want to try anything that might stir it up or make it worse. But for me I have always known and believed there was somehow a connection with my neck. Now having a doctor confirm that yes there is a connection there gives me the confidence that I knew my own body well, and was right for all these years that yes my neck can cause these symptoms.

Suzy

[LMG]

Thanks for the info, Suzi. I went to a different type of chiropractor last week- just for an exam. He said he wouldn't adjust my neck manually after I told him the story but that he could use an activator. It looks like a pen or something. I said I needed to think about it. Like you, I can tell the cracking by them would be too rough and set off more issues.

I feel so strongly that doing something for the old whiplash from last year and the pinched nerve will help with my headaches, etc and am going to pursue it. I tried physical therapy in May and the traction was not good for me. They did give me some exercises and stretches...guess I should give it a more diligent effort. Also am considering an orthopedist....in hopes of a treatment.

My GI system doesn't do well with NSAIDs or tylenol (or most meds) but I am looking into natural anti inflammatories.

I am glad to hear you have good days and months..gives us hope. You said you were back to close to 90% at one point...how long did it take to get from very symptomatic to less so?

Thanks!

Lauren

[Ashelton80]

Atlas Orthogonal chiropractic technique has helped me tremendously. There is no doubt that if I let me neck get in bad shape that it makes things so much worse symptom wise. Like right now, I have waited too long in between visits and my body is so on edge I can barely function. Kicking myself! All the cracking you guys are referring to when you move around is the body's way of compensating and moving the vertebrae around the subluxation to protect the spine. There have been times when I couldn't get to my AO chiro 4 hrs away, so I used the diversified or manual technique and it's usually fine, but I have had a couple of unpleasant reactions. And yes the Autonomic nervous system starts at the cervical spine so it makes sense.

[all4family]

LMG, when I was at my worse was about 2 years that was 2004 to 2006. These years consisted of drug treatments and interactions, then a year of recovering from those reactions. My illness at this time was severe, and without going on and whining about it I will just say that I could not have gone on that way for long. then from 2006 to 2008 I was still pretty sick, but was happy for the function that I had. I was able to get off my floor where I spent almost all my time, and begin joining life again. Each day away from the medications was a better day for me. Then I believe it was 2008 when I went to the dentist and was prescribed profolactic antibiotic. I was supposed to take 4 pills, and on the 3rd pill half of my body swelled up, which led to benadrylle, which led to another reaction which led to the hospital a place I swore I would avoid at all costs. Well after a few months of this again I went to Mayo Clinic. This is where a blood test led me to find out I had dysautonomia. after this I have been on no medicine except once when my pain from a tooth was so bad I took some tylenol, but I was so scared. During this time my neck would periodically crack. It always happened when my symptoms had gotten bad. But after a few big cracks and a healing period I always got better, it was so gradual I forgot how sick I had been (thank God). Then recently I had been working outside in the heat, and one day I had a huge crack in my neck. Well this is what started this spell for me. But this has only lasted about a month, and I am already getting back to where I was before. So for a specific answer to your question it was all so gradual that I don't know, some times were better then others, but I definatly have gotten better over a longer period of time.

Hi Ahselton80 thank you for mentioning that. I will look that up. I think I have read about that before. I hope that helps you to the point my neck cracks have helped me.

Suzy