angelloz

I have felt sad about having this illness, and probably tense and irritable when I am not feeling well and just concentrating on symptom management. Illness does take its toll one person.

Don, I did this for the first couple of years..less so now. Sometimes I would be standing doing the dishes ( or trying to ) and realize I was holding my breathe for no reason.

I too had the bad feelings of doom etc... at the beginning. Rarely now ,but when it happens it is just as scary. I absolutely have issues when I have any health flares and begin to worry. I had an autonomic doctor tell me that my low blood volume can cause problems with anxiety. When you body is compensating for low volume, depending on the demands you put on it, it starts to pump out chemicals like adrenaline. I fluid and salt load and try a warm drink to calm down. This seems to help me. I used to take ativan once in awhile but avoid it now. For me, the less medications the better.

I admire you for wanting to keep getting back on the horse, pardon the pun. Many suffer from heat triggers and I have had the problem with being busy then stopping and feeling terrible. I suppose you could try another doctor. If this was an easy fix we would all be better but that doesn't seem to be the case with autonomic issues. Plus, day to day symptoms and issues can vary greatly. I would say to try to keep working with your doctors.

I don't know anything about your location, insurance etc. If you have a GP that could get all you symptoms and some records together ,a place like the Mayo Clinic or Cleveland Clinic, might be a good idea. You are usually seen by one doctor that would set things up in other areas if it was deemed necessary. It can take several days but it is usually well coordinated and they try to accommodate those that have traveled a distance to be there.

I have had a tight/ throat seems swollen a few times, and I absolutely get tender lymph nodes. Holding ice on my neck, throat area helps me.

Yes , Yes , Yes ! Mine is better now but even turning over in bed caused VERY forceful ,scary , heart beats. I was told at the Mayo clinic mine was related to low blood volume. Salt and fluids helped as did propping up a bit, although I have trouble sleeping that way. It is normal to feel scared at first. I remember laying there thinking whether or not I should go to the ER. In fact early in my journey I did go several times. But I DID get several tests done to rule out heart issues. I think this is important as we are all unique.

Perhaps have your doctor look into Mast Cell Activation Disorder. Ask about having your tryptase checked when having a reaction. In needs to be kept cold and they won't go through all of the process in the ER unless you have a script from your doctor. Just my thoughts of things to address with your doctor.

sgreen54, I am not sure how weight might be a factor. In my case I am underweight and constantly struggling to gain. You would think this was a good thing..lol. Also the sitiing standing , length of time is variable for me and can fluctuate day to day. Some doctors have rechecking my standing heart rate after 5 minutes or ten minutes, it is odd how different doctors seem to have different ideas about this. The tilt table should give them and you some great insight. For one thing, the tilt table is done as is stated , at a tilt, not totally upright. There is a reason for this I am told. All the best to you on your journey to getting some answers.

I think the best first step will be the tilt table. I have had two tilt table tests and they were a bit different in their approach. You should get some good information!

chiming in....resting upper 60's-80. Standing 90's Activity...even going up one flight of stairs 120's. A few freakish times of 140's for no apparent reason. Early on a jump from 60's to 120's just getting out of bed. I think pushing fluids helps. Over time this has calmed down some. I certainly can relate to the laying there and trying to figure it all out. I ruminate about all my symptoms quite a bit at times.

I don't know anything about the prolia shot but understand your concern. Do you have a neurologist you could ask about this. Maybe an opinion from another doctor that knows your history might be helpful.

We all understand exactly what you are saying. I guess in truth before I was hit with this terrible disorder, I may not have understood others with this problem. unless you can walk in someone's shoes it is difficult to grasp what they go through. Be kind to yourself and hang in there!

“If we surrendered to earth’s intelligence we could rise up rooted, like trees.” —Rainer Maria Rilke

I am always nervous, but seem to do fine. As mentioned by Jan...the lines and standing can be the worst problem for me. I too bring snacks and am very hydrated beforehand.

I am certain the people running the tests understand how stressful it can be. Just think...this is progress toward getting a diagnosis and some treatment! Good Luck :).

Welcome and thank you for sharing your story. I can really relate to the temperature swings. I often ask someone else if it is actually really hot, ( or cold ), in the house because it is probably just me. When I get severely chilled I have to take a hot shower to bring my body back to normal, I just can't warm up any other way. If I'm melting, I hold an ice pack against my body. When at my worst I watch a favorite mindless TV show, meditate, bird watch out my window. Some days it is just plain hard to accept. I hope youfind the medication that helps you the best. Having a doctor that really listens is half the battle :).

Hi , You can get a pulse oximeter fairly cheap on Amazon. It can be comforting to know you are getting more oxygen than it feels like. I have had breathing issues since the start of my autonomic issues that don't always coincide with tachycardia. Sometimes it was like my body didn't breathe automatically and it would take a great deal of effort to breathe. sometimes it was difficult to breathe out as well. It could be rather scary. Also, when I would start to doze off I would jerk awake and need to breathe. Sometimes when standing I would realize I was holding my breath. I know another member who had a great deal of breathing issues. I too had normal lung function tests. Hang in there!

I recently noticed a couple of nails with large white blotches. not the small white spots everyone gets. Noticed this right after having the flu. Also after I became ill..no more moons at the base of my nails except on one thumb. Well that's my nail update.

Interesting observations!

I always thought tryptase was the gold standard for Mastocytosis...but even with high levels they would do a bone marrow biopsy. I think elevated prostaglandins and other criteria could point to MCAS. I have elevated tryptase and prostaglandins and other markers and was diagnosed with MCAS. I am still investigating this as the antihistamines didn't help me. I had a BMB which was negative..that was a few years back. Your doctor will have thoughts about this I imagine.

Medications are awful for me. Every time I really need them it is so scary. Foods are problems for me due to migraines. I only took Florinef for a very short time so I can't speak to that. Good luck.

Other, Head pain and pressure from low blood volume.

I had an extraction and just went with numbing shots without epinephrine. That night I had a bad BP drop when I got up to use the restroom but now am thinking it might have been a mast cell reaction. I have been diagnosed with MCAS. Overall it went pretty well. Let your oral surgeon know your concerns.

I am advising that you call your doctor ASAP. I take oxygen for cluster headaches..I was told it was safe except in some conditions. My doctor said you can get a problem where your body is not breathing out enough ( sorry can't remember what you breathe out NO maybe??? ). Anyway your body just stops breathing because it gets a wrong signal. It can happen in people with COPD. Your body thinks it doesn't need to breathe. Please let your doctor know what happened!