Jump to content

Recommended Posts

Hello, I have followed this dysautonomia forum for a number of years without ever joining. I was diagnosed with dysautonomia about 6 years ago by my cardiologist after failing the tilt table test ( where my BP plummeted but I never lost consciousness), and my cardiologist’s diagnosis given my symptoms. I have never passed out like so many others with this, but have been diagnosed with vasovagal syndrome (rather than syncope due to never having fainted). I have interstitial cystitis, IBS, RLS, fibromyalgia, hypothyroidism, and crazy symptoms that take turns making life “interesting”. Due to bi Gemini PVC’s and bradycardia I had a cardiac ablation three years ago. I am probably one of the oldest members here and believe I have had dysautonomia for many, many years. That is my background info. Right now I am seeking information from others regardless of age as to dealing with anxiety which I firmly suspect is due in very large part to my nervous system not working as it should. I consider myself extremely fortunate to be able to be as active as I am, but the older I get the harder my symptoms become to deal with. Anxiety is my biggest and most difficult symptom at the moment for the past several months. I am extraordinarily medication sensitive so other than medication for hypothyroidism and ibuprofen for OA I take no prescription drugs as I am highly allergic to many and side effects in general are terrible.
 

My immediate questions: does anyone else have intensified tinnitus when your anxiety heightens? What about muscles pain and tingling, for lack of a better word, with increased anxiety? Super brain fog? Anxiety that really worsens with barometric pressure changes? Anxiety worsening far more than is “normal” with life’s ongoing challenges? Worsening of many previous symptoms?
 

Thank you very much for any responses. Very glad to be here.

 Glassywood

Link to post
Share on other sites

When I got sick with dysautonomia I later developed OCD. Horrific but I went to a clinic and worked really hard to get better. But as I've declined drastically these past 6 months the OCD and anxiety are horrifying but they are physiological like you said. I was treated as a psych patient for years starting as a teen before being properly diagnosed and nothing ever helped. It's odd but the OCD I have is only focused on my bladder (I have IC) and my sleep problems but I mean IC is so so so bad who wouldn't be frightened? And these constant adrenaline surges. Saline iv's really help me more than anything to calm me down. I feel your pain, there has to be a connection and I hear a lot of people with POTS complain about anxiety. It kind of hit me all at once after contracting mono, I was "normal" before the mono. Music was always my therapy but I can't even play instruments, sing, write songs, or even listen to music now so I'm feeling sad about it all. My dogs definitely help me. I have a therapist but we can only talk for 15 minutes before I crash badly. I'd like to hear what others have to say. 

Link to post
Share on other sites

Thank you for your response. I am very sorry that you have had such ongoing difficulty with anxiety issues. I, too, find great comfort from my sweet little pup who seems so capable of reading my emotions. Recently I have been able to actually do a bit of gardening in the way of pruning bushes, something I have not been able to do for a number of years. It has felt wonderful to be in the sun and helping my husband with yard work as he does all of the major housework. The outdoor work has greatly helped my anxiety for at least some of the time for which I am very grateful. Over the years I have found that this particular symptom of anxiety really raises its head in the springtime. It is very cyclical in nature. 
 

It sounds as if you have worked very hard on your various issues. I hope your hard work will bring you peace and restored health. 

Link to post
Share on other sites

@Glassywood - welcome to this forum, and I am so sorry you are dealing with all of this!!! I too have similar symptoms as you - IC. IBS, arthritis and NCS ( neurocardiogenic syncope, same as vasovagal syncope ). as well as HPOTS. I am 54 and started getting severely ill when I was 42. --- I understand your issues with anxiety, and when I was at my worst I too dealt with that. I found relief when i became disabled and could avoid pushing myself. I now lie down to rest both to prevent symptoms as well as to stop them. I find that resting a lot and doing certain exercises ( I have a rowing machine and also take short walks ) helps a lot with the symptoms, anxiety and brain fog being some of them. Since you are hightly medication sensitive meds may not be an easy option for you but I am on Ritalin for the ADD and brain fog and ( rarely ) take a low dose Ativan to calm down when my Hyperadrenergic symptoms kick in. Mostly though I find rest when anxiety or overactivity kick in helpful, if I do it as soon as I feel uneasy. I retreat into my bedroom and drink a cup of tea or close my eyes. When I am rested I get up again and do whatever I was doing. Deepbreathing exercises also help. Here is a link fro our Information Resources section that you may find interesting: 

I Can't Just Relax - Understanding Anxiety and Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET)

Just my cup of tea … self-help options for managing POTS symptoms - POTS - Dysautonomia Information Network (DINET)

Finding Balance by Trudi Davidoff - Newsletters - Dysautonomia Information Network (DINET)

Best of Luck to you!!!!!

Link to post
Share on other sites

I am so sorry that you are struggling with this. I am 59 years old and have been in full blown dysautonomia for 6.5 years. Like you, I find it increasingly difficult to deal with stressful things as I get older and have noticed that my healthy family/friends also do so. Maybe it’s part of aging to some degree? I have hyper POTS, OH, extremely labile blood pressure (supine hypertension, OH), autoimmune disease etc. This past year has been a very anxious one for me. I find an alpha blocker for the excess norepinephrine, exercise, nature, hugs, dogs, weighted blankets, just having a prescription for anti anxiety meds (I rarely use them) helpful. I can’t do anything that involves conscious breathing, it makes the anxiety worse. I read somewhere that the excess norepinephrine itself and the constant activation of the SNS cause feelings that mimic/cause anxiety so which came first? I found the book How To Be Sick by Toni Bernhardt helpful. She discusses the impermanence of everything in life which I try to remind myself of when I get anxious. This too shall pass. I distract myself in whatever way I can tolerate on the day—reading, TV, playing with the dogs, sitting in the yard, calling or messaging a friend etc. I am exploring exactly this and what to do about it with a new therapist who was a pediatric cardiologist and understands the pathophysiology of dysautonomia. 

Link to post
Share on other sites
5 hours ago, Pistol said:

@Glassywood - welcome to this forum, and I am so sorry you are dealing with all of this!!! I too have similar symptoms as you - IC. IBS, arthritis and NCS ( neurocardiogenic syncope, same as vasovagal syncope ). as well as HPOTS. I am 54 and started getting severely ill when I was 42. --- I understand your issues with anxiety, and when I was at my worst I too dealt with that. I found relief when i became disabled and could avoid pushing myself. I now lie down to rest both to prevent symptoms as well as to stop them. I find that resting a lot and doing certain exercises ( I have a rowing machine and also take short walks ) helps a lot with the symptoms, anxiety and brain fog being some of them. Since you are hightly medication sensitive meds may not be an easy option for you but I am on Ritalin for the ADD and brain fog and ( rarely ) take a low dose Ativan to calm down when my Hyperadrenergic symptoms kick in. Mostly though I find rest when anxiety or overactivity kick in helpful, if I do it as soon as I feel uneasy. I retreat into my bedroom and drink a cup of tea or close my eyes. When I am rested I get up again and do whatever I was doing. Deepbreathing exercises also help. Here is a link fro our Information Resources section that you may find interesting: 

I Can't Just Relax - Understanding Anxiety and Chronic Illness - Mental Health and Chronic Illness - Dysautonomia Information Network (DINET)

Just my cup of tea … self-help options for managing POTS symptoms - POTS - Dysautonomia Information Network (DINET)

Finding Balance by Trudi Davidoff - Newsletters - Dysautonomia Information Network (DINET)

Best of Luck to you!!!!!

Thank you very much for your reply. Like you I have found that allowing myself to relax is often a help with the anxiety. I failed to say I am 74 years old and had always led an active life as an artist, often pushing myself to the point of utter exhaustion because I had no idea why it was so difficult to keep pace with my peers and because I had a business to run. I am grateful for your suggestions of information resources. I will check them out. It is wonderful to be getting such compassionate feedback. Thank you! I wish you well. 

Link to post
Share on other sites
28 minutes ago, p8d said:

I am so sorry that you are struggling with this. I am 59 years old and have been in full blown dysautonomia for 6.5 years. Like you, I find it increasingly difficult to deal with stressful things as I get older and have noticed that my healthy family/friends also do so. Maybe it’s part of aging to some degree? I have hyper POTS, OH, extremely labile blood pressure (supine hypertension, OH), autoimmune disease etc. This past year has been a very anxious one for me. I find an alpha blocker for the excess norepinephrine, exercise, nature, hugs, dogs, weighted blankets, just having a prescription for anti anxiety meds (I rarely use them) helpful. I can’t do anything that involves conscious breathing, it makes the anxiety worse. I read somewhere that the excess norepinephrine itself and the constant activation of the SNS cause feelings that mimic/cause anxiety so which came first? I found the book How To Be Sick by Toni Bernhardt helpful. She discusses the impermanence of everything in life which I try to remind myself of when I get anxious. This too shall pass. I distract myself in whatever way I can tolerate on the day—reading, TV, playing with the dogs, sitting in the yard, calling or messaging a friend etc. I am exploring exactly this and what to do about it with a new therapist who was a pediatric cardiologist and understands the pathophysiology of dysautonomia. 

I find it so interesting that there are so many similarities as my own in the responses I am receiving. I have never been able to do breathing exercises as they do worsen my anxiety. I have also found Toni Bernhardt’s book helpful. Distraction is indeed a major key to the dilemma called anxiety. The hardest times are those that come when I am unable to easily distract myself. I try to remind myself that this is my life, that it is what it is and I must find ways to navigate the “ weirdness” of some of the things that my mind and body now encounter as I age. Remaining positive is paramount though not always easy! Thank you for your sharing and I am happy you have found things that are of help to you. Best of luck to you with your new therapist. 

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...