angelloz

Hello, I can really relate to your rolling over in bed thing. I had/ have low blood volume so my heart would slam forcefully.  Salt and fluids help me the most with heart rate and some other issues. I did try an SSRI but couldn't convince my GP to give me a low enough dose so it made me feel pretty bad and I stopped. I believe a low dose would have had a better outcome. I go through periods of relapse but to this point they haven't lasted as long as the first round. I am never the way I was but better then at the beginning when I couldn't walk down the driveway and back. Everyone is different and I suffered from reduced sweating. Hope the SSRI works great for you.

firewatcher, I am  very certain homones play a large role in all of this. You do need to find another doctor that will listen and help you on your journey. Even if they are not a specialist, someone that is interested and receptive.

HangingByAThread.  Might I ask what medication helped your migraines?  I have horrid ones...start to vomit, I have low blood volume so things go downhill from there. Then there's the three days of unbearable pain. Hoping it might be something I have not yet tried?

I don't have advise but I feel for you. I do believe that having a real plan in place can make things more hopeful. I think the plan sounds great and your doctors seem to be covering your bases! Hugs and healing.

I see some listed in my area. I live near Kansas City.  Keep trying...everything seems so difficult at times.

I can alternate ginger and zofran. This helps me with constipation.

Sometimes I bruise very easily. Recently I had a tooth extraction and the bruising was terrible...lasted 3 weeks. I do eat a lot of ginger for migraine and olive oil, both which have blood thinning properties I believe. I think several others have mentioned slow healing. I hope the cardiologist is helpful!

Mine is typically much lighter in color. It is probably great that you are having another one done. I know that color is something they look at and testing should alert you to any issues.

Craig,

I had  hemodynamic testing done at the Cleveland Clinic. ( This is a blood volume test ). I have actually had it done twice. First time showed mildly reduced blood volume, the second time it was moderately reduced.  It is a long test and they take your blood every 15 to 30 minutes I cannot remember exactly as it was awhile back. I think as someone else mentioned , while some doctors give pots varieties certain  labels, Vanderbilt just considers it different presentations of the same thing.  

Sort of funny story...on a couple of occasions when I have been in the hospital , they have come in and taken my blood pressure at night. often they will wake me up, make me put my legs under a pillow etc until my blood pressure increases. Nothing is mentioned about this when I am released. I am thinking if it happens here, I am certain it happens at home .

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Hello, I am very interested in your results. When I was searching for answers an elevated tryptase was discovered. I too had a bone marrow biopsy that was negative. I have been diagnosed with hypovolemic dysautonomia and MCAD although I don't have allergies, more medication sensitivity and antihistamines do not help me. I have never been diagnosed with EDS.

My tryptase has ranged from 11 to 17.5.

Great ideas!! Thanks to all.  Songcanary, I hope you are feeling better soon. It is such an uncomfortable feeling.  I can't do baths due to UTI but will try the magnesium in a foot soak!!!

Will try to keep this question brief and hopefully coherent.  At the beginning of my journey with dysautonomia  I had plenty of anxiety. ( Diarrhea every morning TMI ), heart racing .dry mouth, and so on. I was reved up all the time and couldn't even sleep. I was hypovolemic ,low potassium, with other autonomic problems. which I thought was strange as I would think low blood volume would make you tired.  In any case the constant hyper feeling gradually calmed down throughout the past several years. only flaring for a day here and there. Lately, I have had some other health problems and a bit more stress. Now I am back with full blown anxiety and all that comes with it. I don't know if I am having an autonomic flare causing increased anxiety, or if increased anxiety is causing the autonomic flare. I hope it is the latter and I am not back to where I was before, that was awful. My days are a struggle but was feeling a bit better than at the beginning. I was off most medications and mostly just hydrate constantly. Has anyone else out there had anxiety and stress cause a flare up? Any tips?

Yes Yes Yes...a worried patient too :).

When I get the doom feeling I do the in-breath to the count of eight...hold a bit the out-breath to the count of 12. It helps me a bit. It is an awful feeling so I totally understand. 

When I first was diagnosed I had a high heart rate upon standing and was told probably pots. Over the years the high heart rate happens but much less often. At the Mayo they ran tests that showed reduced sweating and low blood volume and doctors weren't convinced of pots.  Autonomic dysfunction and autonomic neuropathy  was discussed more, with advice on fluid and salt loading.  Thank you for sharing. Just uncertain as to what to pursue. Hope you are feeling well today:).

This morning while in a store ( don't know if I should name the store), I began to feel shaky, weak, darkening vision and knew I was in trouble. Made it home and then had stomach issues, loose stool etc... Blood Pressure was odd,  High diastolic  making a very low pulse pressure. Lay in bed with pillows under my knees until I recovered a bit. I have had this happen with this store before but also have made trips without this occurring. I am wondering if anyone has had a reaction like this that does NOT have mast cell issues ?  My doctor is sending me back to immunology to check this. I have had elevated tryptase and a few other markers but feel worse and not better on antihistamines or mast cell stabilizers. So wondered if this type of reaction could be from autonomic issues alone. Any input would be greatly appreciated.

I do not have any insight or advice but wanted to say that I too developed extreme reactions to medications I previously tolerated after my autonomic issues began.

I hope you can get some answers. What have your doctors suggested?

Hello,

I was diagnosed about 6 years ago. ( I was 51 when diagnosed. I have improved slowly but doubt I will ever be cured and I still have relapses. Have never found the underlying cause and also have a MCAD diagnosis.

For myself...salty foods like cottage cheese, chips etc...help. Also, the electrolyte drops for water help but I don't put in enough to make it taste overly salty. Plenty of food with any salt increase helps me. I understand the issue because I have hypovolemia but too much salt causes migraines, which causes vomiting which defeats the purpose, so it is a delicate dance.

Oh my! So glad you made it to the hospital and they found the cause. I have never had this but experience horrid headaches. I have had several scans. Hopefully the meds will work so you can avoid surgery and begin to feel much better. All the best! Keep us posted.

I haven't checked mine in these various situations but you have peaked my curiosity. Especially morning levels. I plan to check this as I always wake with a headache that often feels better after moving around etc...  I have had times when I am struggling to breathe and feel terrible and my pulse ox reads 98. I will report back.

I too use glycerin suppositories when needed. Ginger and magnesium help me too. I have had motility tests and things were fairly normal but some muscle issues so I am looking into some exercises to help with that. Some days are very uncomfortable with right sided pain when I am having the most trouble. Hope you get some answers and RELIEF!

Hello, I actually have several thoughts on this. But first, Wish you were feeling better. I have been told that watery eyes and neck pain can come from migraine. In other words migraines causing neck pain and not the other way around like we usually hear. I also have MCAD and I suspect a connective tissue disorder although have not been diagnosed with EDS. When I have the eye issues that you speak of, sleeping with my head more elevated seems to help. Sometimes putting an ice pack under my chin on those glands helps me. A low dose of magnesium before bed has helped a bit too. It is a terrible feeling when you don't feel right at all. It is good that stopping fruit has had a positive effect on your head pain. Do you take anything for your mast cell issues? For me it seems that most medications tend to make me feel worse. Let me know if You have any questions about anything I mentioned. I will probably think of something else later...I am a bit worn out this evening.

It is nice that you can drink Gatorade. I think the artificial flavors trigger my migraines. I am going to try again because the sports drinks do make my body feel better. With weather changes I find just staying hydrated can help my migraines a bit.

My breathing problems go in waves. Sometimes struggle for weeks then not so much, others times varies by time of day or activity. I have been having more problems lately and do notice humidity makes things worse for me this spring. At the beginning of my illness I too only felt breathing was better when laying down. As KiminOrlando said, maybe rule out cardio issues?  Keep at it until you feel safe and that it is just pots related.