kpflma

This has all been really helpful! Thanks everyone. 🦁

Me too Kayjay! A glass of white wine tends to level off my blood pressure (my BP is usually low/often variable) and clear up my mind. I have always thought that was weird. Red wine makes me feel worse though --the tannins I guess. I do worry about the dehydration effect, but it does seem to help.

Thank you JaneEyre9 ---very helpful! I guess I am still looking for the magic formula. I think my main inflammatory "food" is white wine that I tend to drink in the evening. I am going to drop skipping this and see if there is a difference. Thanks again....kpflma

Terri, I take LDN (2.5 mg per evening) and it helps me quite a bit, and I dont know why. I have primary autonomic dysfunction ---I saw a doctor who thought that there was an autoimmune component and put me on this. I saw an integrative doctor --any doctor can write for this. Good luck!

I take 2.5 ml before bed. I tried different doses before hitting on that one. If I go higher, I get crazy dreams and my sleep is poor. Also, if I take it during the day, it does not help. The evening dose has helped quite a bit however! Good luck!

Hi Blue, I was interested to read that you and another member mentioned Yaz. I have primary autonomic failure, not POTS, but also, have never figured out a cause. My neurologist tells me it is "bad luck". My initial symptom was extreme dizziness and then I had extreme bradycardia, my heart rate got very very low, so they implanted a pacemaker (I was only 40). So, I developed sick sinus syndrome, and the doctors think that is due to the dysautonomia --but others have said those are two separate things (which seems strange to me ---how unlikely would that be?). I now use the pacemaker 98% of the time in the atrium and about 40% of the time in the ventricle. Anyway, this all started after I was on some strong hormonal treatments. I have always wondered if that was the trigger/cause. That would be consistent with your experience with Yaz maybe. I am doing much better, and I have tried various approaches --some helped, some didnt, some helped for a while and then didnt. The first thing that helped me was a network chiropractor --much different from a regular chiropractor. I have a science background, so I was very skeptical --but it made a difference! Got me back to work! Acupuncture has helped, but it seems more subtle and doesnt seem to have a lasting effect. Iyengar yoga --big help! Water aerobics and swimming and walking my dog (every day even though it sometimes seems like torture). Meditation of course. I have always had a very good diet, so I stick with that --lots of organic veggies, organic meats, low on carbs, no processed foods, and not much sugar or dairy (I cannot totally deprive myself!). Aromatherapy has helped with my depression and anxiety and I take anti-depressants too. I am developing the skill of knowing when and how to push myself (that morning dog walk and getting to the pool) and when and how to give myself a break. I have not gotten much help from doctors of any type really. I do have a great neurologist who diagnosed me and prescribes me Florinef when needed, but not much more than that. Recently, I saw an Integrative doctor (is that what they are called?) who prescribed low dose Naltexone (LDN). He thought I had some kind of auto-immune problem even though my tests have been negative (although I do have oral lichen planus). Anyway, that helped! It took a while to get the dose quite right, but I take 2.5 ml in the evening. I still sleep a lot --9 to 12 hours per night, and feel like I need more --but then how would I have time to walk the dog and go to all of my doctor appointments?? Ha/Ugh. Help all of this helps. Stay hopeful! The symptoms will wax and wane....research is being done and you have this great community behind you as well. K

Hi JaneEyre9, I looked up that book and it seems specific to cancer. Does it outline the diet you describe or can you recommend another book that does? I mostly eat this way --I avoid sugar and processed foods. I do eat yogurt however. I want to see if there is anything I can do that will improve upon what I am already doing. So glad to hear you had a positive experience and are feeling better! K

Interesting article! Thank you

I am so sorry to hear about your dog's health. My dog passed a year and a half ago, and I did have a flare up during that time. It is heart breaking to lose a beloved pet. I hope she still have plenty of time left. Kathy

Ancy, I am sorry to hear of all this. You are in my prayers and a big hug to you. K

There are many older dogs who need homes. You probably could find a winner :-)

Hi Ebrahimi, I also have been diagnosed with PAF. My understanding is, also, that the symptoms can be very different with individuals. I do have irregular postural hypo-tension. However, mine is often accompanied by supine hypertension. I can go months of even years with stable blood pressure ---110-120 when standing and supine. Then, like now, I will develop OH and just be flattened by it. I have not been able to identify triggers. My neurologist advises me to stop looking for triggers as you can always find something and that may not necessarily be it. Of course, I do everything I can to avoid triggers. I do have heat intolerance and hypohidrosis as well but that also comes and goes. I tend to feel better with salt. I do notice that I feel much better when drink a lot of electrolytes along with my salt. I do not have heart palpitations but did suffer from severe bradycardia and they implanted a pacemaker when I was quite young. I don't tend to have much breathlessness. When it happens, I am generally doing something physically taxing. I only have mild or moderate exercise intolerance, so I do find that my symptoms are better with a regular exercise plan. At the very least, I walk my dog once a day. I may feel dizzy, but I drink a lot before and after and that seems to help. Are you able to exercise? PAF is not as common as POTS. I don't know enough about it to explain why we don't have tachycardia. Nice to meet someone who also has PAF. I have found that I have periods when I do pretty well and then, I will have a big or small relapse. I have to remind myself to wait it out and I will stabilize. It never seems to happen soon enough! Florenif might be helpful for you, especially since you don't have hypertension. I take Florenif but it means that I am hypertensive all night when I am lying down which is not a good thing. I hope you find some answers.

My mood has been radically effected by my dysautonomia (I have pure autonomic failure). Before I became ill, I had suffered from depression and anxiety. However, once I became ill ---WHOA! I experienced some very deep depressions and panic attacks that were worse than I could ever imagine. I have tried all sorts of approaches: psychotherapy (I am actually a psychotherapist myself), acupuncture, mood stabilizers, exercise, herbs etc. ... what helped me the most was Celexa. I don't like to push anti-depressants but that was what finally helped me. The occurrence of those symptoms do not always occur when my dysautonomia symptoms flared up. However, having dysautonomia just seemed to change my emotional brain chemistry. It is also definitely a factor that the dysautonomia caused some discouraging life changes ---losing my career, losing my marriage, not being able to have children. A lot of loss to deal with. I am amazed by how brave everyone is on this forum.

I was in a low-symptom state for about 7 years, and I was getting acupuncture during that time. I believe that it helped me maintain my health. When I stopped, I did not have a full fledge recurrence for a couple of years. I think if I had stuck with the acupuncture, I probably would not have had the recurrence. I just started again last week. I do notice that I feel energized after my sessions. I will keep you posted! Kathy

That is a very helpful link! PAF is pure autonomic failure. Seems like most of the people on this site have POTS. Of course, there is much common ground.

Thank you for your responses! Katybug, I agree ---I think I cope better with a dog. Statesof, thank you for sharing your guilt! Helps me feel less alone with that. I think our dogs just want us, and they just want us to be happy. They probably would rather that we don't feel guilty :-).

Hello all, Does anyone have a dog? I do, and she is presenting unique challenges, and benefits!, for me. When I was first diagnosed with PAF, 11 years ago, I already had a dog. She turned into a sortof medical support dog for me. She would nudge me to lie down when my BP would drop too much and she would often herd me to bed ---among other things. When she died 16 months ago, I greatly grieved her loss. I think I grieved her even more as she was so supportive of my health. My neurologist felt that my dog helped my illness and encouraged me to get another. I did get a new dog from the shelter, Dixie, 6 months ago. She is wonderful. She does not have my previous dog's sensibility about my health, but she is wonderfully supportive in other ways. She gives me an important responsibility and a reason to get up everyday (on days that I am not working). She also keeps me moving and provides needed company (I live alone with no family). My concern is that I cannot always walk her as much as I would like when I am symptomatic. I do have a dog walker to help. I am also concerned about the future. Dogs are expensive. If I have to stop working (I hope that doesn't happen!), I wonder if I can afford her. Of course, I love her like crazy and would hate to give her up. I just wonder what is best for her. Do other people have dogs? How have you managed dog care and dysautonomia? Would love to hear from you! Kathy

Hi Hello Darling, There are so many good suggestions here that I don't know if mine will be helpful. I have a dog so I walk her daily. I think that helps my muscle tone and my soul. With PAF, maybe there is not as much of a concern about being upright. I get low BP but not tachycardia. For salt, I drink chicken or vegetable broth. I stick with organic and use the bouillon cubes. I even add salt to the broth. I will have about 3 cups of that a day with the extra salt and I get my daily 4g that way. I drink it warm. I think water exercise is a great way to go. I swim and do water aerobics. It feels weird to get into a pool when I am feeling dizzy. But the dizziness goes away once I have been in there for a few minutes. Sometimes, I just kick with the kick board. I feel like a bit of a dork, but what are you going to do... I, too, find this forum to be a wonderful gift. I just found it a few days ago. I was diagnosed with PAF about 11 years ago. I was dizzy and out of it for a while. The big clincher was my heart rate getting dangerously low. I was rushed to the hospital and had a pacemaker implanted. Since then, my symptoms worsened and now wax and wane. Just recently, I had my biggest relapse and have spent most of the last 10 days in bed. Makes me feel so lazy! I am no stranger to guilt. Thanks for all of your posts. They are very helpful for me to read. Kathy

This is a great list of salty foods! Thank you!

Thanks for all of your electrolyte suggestions! :-)

Hi, someone mentioned an electrolyte drink. I am breaking the bank on pediolyte. I need a full quart before I get out of bed. Besides the problem of all that sugar, it is very expensive! Any ideas on how to get those electrolytes in the morning?? Thanks, Kathy PAF