Roxy

Have they ruled out sleep disorders…

When I moved many times due to the husband (military) I had some major issues when I moved from a lower elevation up to higher elevations. We are all different in how our bodies adjust to change, I found that I had to work extra hard on hydration and electrolytes and over time my body did adjust, my doctor said my body was almost having signs of altitude sickness. Good luck in your move and finding proper medical care (doctors) beautiful place to live.

You said you requested an ADA accommodation and that it was granted (6 months ago) did they give you a copy of the ok for the accommodation in an email, hard copy… can you talk to the old HR person and get them to give you a statement backing up the request. Keep a log of everything going on. Good luck 

I was told coffee has/can have molds and both decaf and regular coffee have medium/high histamines (decaf may have more because of the way it is processed) also if you have oxalate issues coffee and tea have that also.

I have POTS, NCS, MCAS, Asthma, Migraines and possible EDS and SFN but amazing as it seems Botox works for my migraines and cluster headaches, we are all different so I tried it even though my Dr was not sure because of all the other allergies (mold, pollen, other environmental ones…) would not hurt to talk to your doctors and see what they think between you both as they know your in depth medical history.  Good luck

Over 20 years ago my doctors told me no more hair color, nails, makeup, or scented products… lotions, perfume, cleaning products… I was fine up till my mid 20s then bam these all started causing me trouble. They still are not sure if it is pot/ncs, MCAS, regular allergies but if I try doing or using these things I pay in a huge way, just not worth it.

I do better with the LR so my doctors have me on 1 LR and 1 NSS twice a week, it would be 2 LR but my MCAS acts up and running slower is much better. 

I fluctuate between stomach dumping and gastroparesis the joys of dysautonomia 

Have the doctors considered dronabinol/ marinol fda approved medicine THC legal with medical prescription in USA, you said they want you to use marijuana/cannabis.

What about mcas, that is also another possibility for the fever

When I was drinking the 100-120 ounces of water ( water, sports drinks...) and salt loading like my my doctors said to consume in a day I was getting awful migraines, they finally figured out in my case I was washing all my electrolytes away so I now get more electrolytes in my infusions to help offset the loss from oral drinks.

Sometimes my symptoms were like you described and we could not find rhyme or reason to it then my son who was a weatherman with the military asked if I considered the barometric pressure and other weather conditions.... that was part of my problem. Good luck hope you feel better

I have food issues from the Dysautonomia like you are describing but also from the mcas. I just don’t eat it if it is a problem now. Every couple years I try some of the foods I really miss, sometimes it is ok or I decide if it is worth it to eat. Good luck

I do have an instapot that we use but the diet/food my husband needs and the food I need are at polar opposites it is like cooking 2 different meals mine and his. I have done the freezer stock up...was just hoping to get something simpler for the two of us. I have even looked at the suvie cooker, buying a harvest right freeze dryer...thanks for answering and trying to help

I have POTS, NCS, MCAS... I am trying to find a diet program that provides ready made meals that will work with my allergies and other issues for the next 3-4 months. I am having enough issues that preparing meals is not possible and my husband will be having neck  C1 -C3 fused (he already has C3 -C7 fused) and knee surgery ( both knees replaced) so he will be out of commission for a couple months. I was hoping some of you in the group have tried some of the food by mail and can give me honest feedback. Thanks in advance for any ideas and feedback. I just can’t get out to the stores much and prepping the food is not possible, a little bit of prep and 15-20 minute cooking my husband can do sitting down in kitchen. 

I have a cool shirt system and couldn’t live with out it, I used it in Las Vegas Nv (high heat no humidity) and RDU area NC ( high heat lots of humidity) when we lived in these and many other states. I will say that it is expensive to get the cool shirt system, but I have tried many different types over the years and like this the best. They have vests, shirts, and pants. 

They checked for APS or sticky blood many times, I am always just inside of what they say is normal range high or low depending what version of the test they do.

Yes they have been testing me for many years and can’t figure out what is going on. I always seem to be a little high or a little low on the tests. I think my normal does not fall into the ranges they have/use. It is that way for almost everything with me. Glad to hear how well the infusions/port is working for you.

Anyone else have issues with blood clots (DVT, PE, TIA). Doctors are having trouble figuring out the problem, one minute I am clotting up, the next I am    Practically bleeding out. I was not on any blood thinners or other medicine to help clot. 

I have stomach dumping and gastroparesis, depends on what the POTS and NCS are doing at any one time as to what my GI is doing. I have one medicine that helps when the pain get pretty unbearable it is hyoscyamine, you could check and see if your doctor thinks it might be worth trying. Good luck

The port can also do what they call migration/migrating, why not just tell us it is shifting, moving from its original placement. I had that happen and they had to finally do X-rays to confirm it. It really really hurt, they went in and placed it back where it should be and now it is wonderful. I do get a little pain from scar tissue rubbing but so much better than all the needle sticks in the arm, leg neck, groin... I have also had blood clots and been on blood thinners.

I have had my LINQ ILR for around 2 years and it has been a god send. My doctors have been able to see everything I was telling them was happening but sounded unbelievable. The placement of it was relatively easy, I had to have general anesthesia because I am alllergic to locals, I would do it again in an instant. Good luck

I have found CBD oil to help, if you try it it must be the all cbd oil so that it is legal in all 50 states. If you are lucky enough to live in a state where marijuana is legal it will be easy to find a good quality safe cbd oil, otherwise due your research on the supplier you buy from. Please check with you doctor before trying.

Gabapentin is no good for me but it works great for my son.

I have both stomach dumping and gastroparesis it just depends on what my body says is going to work or not work at any given time. Sorry you are having these problems, I would make sure to get with GI doctor for testing. Good luck