issie

@GypsySoulNicole Wondering how you are doing. Ran across an old PM discussing diet from you. Wanted to discuss what your doing now. PM me. Issie

I have tremors too. I'm starting to think mast cell reactions are contributing. Maybe not completely, but a part of it. If the Benadryl helped - could be that connection. Issie

Sue, I do that sometimes too. But if I keep my mast cell issues under better control - it's less. Have you tried treating that to see if it helps? When I'm real bad and want it to work faster, I get children's liquid Allegra. I also take more GastroCrom. If it's POTS related, I find Motherswort or Blackstrap molasses to help. It seems the minerals (or something) in there help and calm the sympathetic system down. Issie

Mine does this too. The heart rate goes up to increase blood supply that carries oxygen. Low oxygen produces faster heart rate. Altitude for sure makes a difference. I was recently at 7,000 feet. Had to wear oxygen the whole time. FYI, docs don't want the O2 to go below 90. That's when they usually consider oxygen. I don't plan to go above 4,500 feet again, if I can help it. Above that and POTS and MCAS go into full swing. Issie

Just ran across this old thread. Thought I'd add to it as I discovered a good bit of the issues is mast cell degranulation issues that goes along with MCAS. It can cause severe hot flashes and tachycardia. Sex can trigger the degranulation as can intense emotion and/or stresses. Issie

Things are improving with my detox and mold treatment. One great improvement is my eyesight. Not only is my vision and astigmatism improving - but my brain fog and energy levels are too. Issie

Bump for new ones. Where's all our old group of POTsies? How is everyone doing? Issie

So sorry. I know staples are better for me. The sutures in my foot/leg did the same thing. Hope it starts to clear soon. Issie

We are so fragile. Anything is possible. You may need to see a throat doc and make sure all is okay. May have to take a look with a light/scope. So sorry. The antibiotics had helped me by 2 days later. Hope they help. It was really painful so hope you have some tolerable meds. Issie

I'm sorry too. Hope things turn out okay. I did better with staples. The stiches I had in my ankle and leg also got infected. I don't know if my skin just didn't like the suture material or what. Antibiotics helped pretty fast. I had to leave the stiches in alot longer than what the doc would have liked. He said it was the issues with connective tissue due to EDS. Just took alot longer to heal. Issie

For us EDS people, as you know, it takes alot longer to heal. They have to leave stitches in longer, etc. The anesthesia doc had to be sure they had me under enough. You don't want to be too alert and feel things. My last surgery was to reattach my foot. Yes, broke it off my leg. They did a block and that allowed them to not put me under too far. I didn't remember anything though. I did fine through it all. Except had wound issues. Got cellulitis from that one. Horrible pain. Don't wish that on anyone. I think the adrenal boost with cortisol has been very important for me too. Issie

At least you figured it out sooner rather than later. Hopefully, time will help. Have you looked into MCAS? Issie

What I know from observance of several older ones who were on statins - One man, went bed bound. Couldn't walk, seemed he had dementia. He had issues with his heart. He got off them and lived for many years. We didn't think he would come out of the hospital. My father-in-law had a very similar experience. He couldn't find his way to his bedroom. Could barely rise from sitting. Was very weak in his legs. He got so much better off them. He does however also have lasting dementia. But that too is better. He was very lethargic and now is much more active. I think they both had dementia before the statins, but the statins made them worse and they both had horrible leg weakness. It's encouraging to note, they both got better, in time, off the med. It is thought that too much sugar in the diet can cause elevated chlosterol and high triglycerides. That can even be too much fruit. My hubby figured out our morning smoothies, with mostly whole fruits, was his culprit. Issie

I'm bumping this to go with another comment so it's easier to find. Other issues that some POTS people may not have considered is mold/fungal issues. I had a 3rd thyroid biopsy and they found a type of mold/fungus that causes tumors in the body. They thought it had turned into cancer, but didn't find that at all. Treating mold and doing detoxing is making a huge difference all the way around. They are starting to wonder if this fungus /mold may be connected to my meningioma (brain tumor). I'm hoping the detox will eliminate the tumors and I won't have to have any surgery for them. Time will tell. MRIs have to be done yearly now as both were growing. We will see if what I've been doing has helped. At least it is with my POTS. Issie

What med? May can give us a better idea why you feel the med caused it. Issie

Just throwing another idea out there. I'm guessing you are in the South and Dr Thompson is your doc. I recently did parent care of my parents before they both passed in AL. I got mold exposure and severe issues with my POTS and MCAS. Living in the South it's worth taking a look into. Also for me was Lyme and other protozoa. Also a big problem in the South. (I have several threads about this.) Issie

First thought is sleep apena. 2nd thought is MCAS. we degranulate worse at night. The issues around 3 also indicates liver detox timing. Issie

I'm HyperPOTS and my symptoms are similar to your wife's. Sojourn being an autoimmune issue, can go along with POTS. It is in my family, but I don't have it. But I do have other autoimmune issues. Many of us with this subset type also has MCAS (Mast cell activation syndrome ). Something else you may want to look into. You can do a poor man tilt test to get an idea of what her pulse is from lying to standing. A electocardiologist or a neurologist familiar with POTS can do a tilt test and other test to determine for sure if POTS is a connection for her. Just want to say, I admire your determination and love you are showing in looking for answers for your wife. When one is so sick, it's hard to be your own advocate. It's great that she has you. Hope you get it figured out. Issie

So great to hear! I love the pool and swimming/playing in it. Best thing for me too. Issie

I've had 8 ab surgeries. I have EDS too. I react to adhesive so I have them staple me instead of tape. If you tolerate adhesive it will hold the incision together better. I have trouble with anesthesia also. Have to have less and give anti naseau meds IV with it. The doc also gives me cortisol as a support for my adrenals during the surgery. They try to not completely put me out, if possible. I tanked during my complete hysterectomy and clean up. They almost lost me. Since then they are careful to not put me under too far. I know which pain meds work for me and they have that on board before I wake up. Always with anti naseau meds. Zofran works good for me for that. Alot of the recovery for me is how positive I can be going in to surgery. I've noticed if I'm a wreck and worried, it has been a worse recovery. I hope things go well for you. Issie

For me, I was very complex and had what seemed to be more than POTS, EDS and MCAS. Finally, got More figured out when they found Lyme with coinfections and Protomyzoa Rehumatica. Then made even more sense with the finding of mold/fungus findings. Not sure if this would apply to you. But it was very significant for me. Issie

Welcome.

Coconut is an antimicrobial and can kill bad bacteria. You may be detoxing. Some however can be sensitive to coconut. Yes, becoming vegan saved my life - literly. I reversed stage 3 Chronic Kidney Disease by doing it. POTS and MCAS are both much improved. Issie

Hey Bren, I had endo too. Had complete hysterectomy at age 36. Had to not go on hormones for 5 months so if any endo was missed, it would dry up. Otherwise you keep getting endo if any is missed. Almost lost it because of horrible menopause at such a young age. But it ended my pelvic pain and most of my GI issues. And there are massive adhesions with us with EDS. Seems MCAS has a connection with endometriosis. Later went on transdermal estriol - compounded and Red Clover. Sorry you are bad again. Last time I talked with you, you was better. Issie

Possibly a Vasovagal response. Happens to my sister. My sister also has CFS and OI. Issie