issie

I asked the guy who told me about this if I could list his post so that others could contact him. He said that would be fine. He also has a Twitter site with a whole lot of articles on there. Mast Cell - Histamine (Immunotherapy With Histamine) | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums https://www.healthrising.org/forums/threads/mast-cell-histamine-immunotherapy-with-histamine.6233/

I have HyperPOTS, Ehlers Danlos, MCAS and a whole bunch of other autoimmune things and Hypogammaglobulinemia, FMS, ME/CFS and severe Mitochondria dysfunction. I have in the past contributed on this site extensively and on another site with years of trying to find answers. This all is in my family and my sister and I are and have been in a lot of studies. I'll warn, this book is very technical and would be considered controversial by Pharma. I'm quite versed in medical things and I'm still not finished reading it. But, I am in self experiment with its ideas and finding it helpful. I've been off all my MCAS and POTS and pain medicines for almost 2 months now. I'm in less pain than I was on them and and not any worse being off them. Still tweaking, but feel encouraged.

It does, but not real specifically. You can PM me and I can tell you more of what I'm doing. I don't think they allow me to do that here. There is a cream I got from Amazon. It took some trial and error to figure out how to use it. But I'm getting it sorted and having benefit.

I was sent a book of a different approach for MCAS and other illnesses. It is very technical, but fascinating. I have been off all my MCAS and POTS medicine for over a month now. I don't have it completely figured out. But making improvements. https://drive.google.com/file/d/0BxK4lGunsmzgTHBCeHJlY01jV1E/view

Depends on if you need the blood vessels to constrict or not. For me, too much constriction makes me worse. I have thicker blood and issues with coagulation so I need to thin my blood and dilate some to help my blood flow. We are all different and have to figure out what our body is doing and why. When I tried the constricting meds, it made me much worse. Issie

There are genetic things that can cause too thick blood. I have Factor VIII and Collagen Binding problems and it's still undetermined if I have APS. I got a positive one time and negative another. I use Vascuzyme by Empirical Labs in the morning and either serrapeptase or lumberkinase at night. You have to pay attention if you start brusing bad you are using too much or if cuts dont clot off fast enough. I also use herbs that can thin blood occasionally. It does seem to help. I also do better to not vasoconstrict internally. I use binders when traveling. Issie

We found I have too thick blood. Instead of blood thinners, I'm using enzymes. It makes a huge difference.

Yes, occasionally I do. Started with silent ones and they progressed to the pain ones. Not often, thankfully, but do get them.

There supposed to be a neurologist at UAB who has started an Autonomic clinic. I hear he is good. Would love to know if anyone has seen him as I just moved to AL and will be starting the doctor hunt.

As a HyperPOTS subtype, I have higher blood pressure too. Absolutely none of the mentioned meds here worked for me. As we further define the subsets, its Interesting that they would still be RXing the same meds tried for other subset types with lower blood pressures. If we aren't deficient in Salt and we aren't losing it.....why add more. I had a nephrologist tell me the normal treatment for low renin and Aldosterone is a diuretic. We dont need to lower either of those (renin or aldosterone) more with ACE or ARB as that part of the system is already broken and too low already. For me, I've found other issues like Collagen Binding Factor and Factor VIII blood thickness issues. Instead of vasoconstricting blood vessels I need to dilate and thin blood. There can be so many reasons for us having HyperPOTS. Also the triad with MCAS and EDS. There is alot of genetics at play here. I've basically had all these things most of my life. Just age has intensified some things. It is generations in my family. I just got results from a study done with my sis at University of Utah and genetics.....lots of genetic mitrochondrial issues. I know we would all like a list and an order to go in. But this is just not possible with the complexity we all seem to have in our own individual puzzles. As for medicine, for me.....still my best thing is 1/2 to 1 50mg. Tramadol and a 10mg Bentyl. I use enzymes for blood thinners and some herbs to help slightly vasodilate my veins. Light Compression to knee when traveling and abdominal binders, still a help. Also have been in treatment for Lyme and CIRS and fungus found in organ biopsy and blood. This has been a huge help. Still treating mostly with enzymes and herbs. Movement is essential with this subset type. We have to assist our heart with pumping for blood flow. Fidget as much as possible and walk, if you can. At least move your legs somehow. Issie

Testing is so "if'y". We did a Western Blot. I came back with positive co-infections. I also had the red circle. But I didn't get tested or treated until years later. Doxy. Did not work for me. My doc had seen symptoms so much and doesn't feel test are accurate - especially if there are autoimmune issues. I see a Naturopath and she uses various herbs in a certain order - based on symptoms and response. We also treated CIRS at same time. I had all test for CIRS. Including genetic testing. All which were very positive. I'm still having problems with both and probably will be a maintenance for the rest of my life. But I'm a while lot better. More puzzle pieces fit together and my symptoms make more sense. (I'm older too - so that doesn't help things.) Issie

Have you tried raising your head up at night to sleep? Many of us find this helps. For me, I also have sleep apenea. Not only obstructive but central. The lack of oxygen can create more tachycardia. Also, mast cells tend to degranulate worse at night. My POTS didn't get better until I addressed MCAS. Some with MCAS have an additional seratonin surge at night and it wakes them up and gives a burst of energy. This usually happens in mornings - but for some reason mast cell issue people have it happen twice in the day. If there are mast cell issues - beta blockers can make it worse. Issie

Nice to hear you're better. I like Hunstville. We looked around up there. But will have to be south of B'ham doing parent care. Maybe later. Nice you found good docs closer by. I don't do typical POTS treatments and prefer functional medicine. As I don't agree with what most docs do for POTS. But I do need to have someone who at least knows about it if I have an Emergency. I'm better too. Been a long road of discovery. Found out I have CIRS and Lyme. Treating those has helped sooooo much. Still have MCAS and issues with EDS. But over all doing better. @derekliz - who do you see? Issie

Which of the two did you like better? You know I lean more alternative and not RX medicine. Issie

@kimbellgirl thank you for your reply. I'm not looking forward to having to get new doctors, as I'm really happy with the ones I have here in AZ. But need to turn the page, with the move, and go with it. My docs here weren't aware of anyone personally. But I've had a few recommended and have a place to start interviewing. Good to know some names and not move there completely unaware if there were to be an emergency. Issie

I'm wondering if any of you are still seeing docs around Birmingham. I will be moving close to there soon and need to find doctors closer to where I will be. Any suggestions? Issie

Are any of you still seeing docs in or around Birmingham? I will be moving there and need to get established with closer to me docs. Issie

I found out I have too thick blood. Have 2 genetic factors that make me lean towards thick blood and blood clots. Also had a positive marker for APS at one time. Explains one reason why I do better to vasodilate and why a blood draw makes me feel better. Also I have genetic markers for hemochromotosis (but don't have) and blood draws lower iron levels in this illness which makes you feel better.

Consider Central apnea. I have both central and obstructive. With central, your brain doesn't tell you to breathe. I have a CPAP that can tell me how many central and/or obstructive apnea I have in an hour. I always have centrals. Sleeping with your head elevated helps. It also helps the brain to drain lymph better when you sleep. That's when that happens. Also, mast cell issues tend to happen to me a lot when I try to sleep. Having my allergy meds right before bed, helps this. The startle thing doesn't happen as much with MCAS controled. Issie

With Kounis Syndrome, at least for me, it's not a constant thing. If I have a really bad Mast Cell Attack - it can affect my heart. Not everyone with MCAS will have it affect their heart. That being said.....beta blockers can trigger MCAS for many - including myself. I can't take asiprin either - that will trigger it for me. Some do use asiprin to create a slow mast cell release instead of of an instant degranulation that is more intense. Kounis is not widely known or acknowledged - except by those who are more familiar with mast cell activation syndrome. Issie

I thought those that remembered her would like to know. She fought so hard to get EDS and POTS known in the UK. It was a hard journey for her, but she did make it more known to both doctors and others seeking help. I'm sad that her very complicated problems couldn't be corrected and her to be able to have the full life she had so wanted. I had private conversation with her and that memory makes me smile. She was a lovely person both outside and in. I'm glad her pain is no more. Issie

I'm so very sad. I had not heard from Diamond/Nina in awhile. Last time I talked to her she told me she was having a very hard time of recovery from her neck fusion. And she had a hard time being on her computer. Since I have EDS too, she offered to look at my x-rays and tell me what she saw. (She always wanted to help others and no matter how bad she felt - she was kind and caring.) I just learned Diamond/Nina went to sleep in death in Jan. She is no longer in the pain she experienced daily. It's very sad that she fought so hard for help and even though she finally got surgery - she still didn't survive. I will miss her. Here is the post from her mother. https://m.facebook.com/ChiariJourney/posts/1982696761998399My deepest condolences go out to her parents and those who loved her. Issie

I do have too thick blood. Positive for Lupus Anticoagulant. A marker for APS. May be another reason why I do batter to vasodilate. Issie

Interesting Natasha. Let us know if you find it. I couldn't use Forinef. Hiked my already too high blood pressure and I felt horrible. Not something I plan to revisit. But me having low aldosterone and renin, at the kidney level, makes me wonder if this is a compensation or if it's an issue. I never got the compounded RX. The guy I was talking to got other employment and the other pharmacist weren't as eager to figure it out. So it got put on the back burner. Does it give you edema? I already have too high sodium levels and don't need you hold onto more salt. My osmolarity levels are high and MSH is low. Signs pointing to CIRS - of which I'm officially DXD with. Treating mold and biotoxins much in the forefront. Issie

This is an old thread, but I'm giving an update. I still have HYPERPOTS. Also was Dx with low renin and aldosterone. Have been Dx with APS with Lupus Anticoagulant - this means too thick blood. It may explain why I figured out that I do better to vasodilation rather than vasoconstrict. This has to be very slightly or I have more issues. But the meds that caused constriction made me way worse. I wasn't able to take the aspirin. I have MCAS and it causes me to have to much issues with degranulatuon. Right now I'm using herbals to somewhat thin my blood. And some of them are mild calcium channel blockers (as are some of the meds I use for MCAS (GastroCrom) and POTS (1/2 Tramadol). Calcium channel blockers dilate the veins. This is an unusual finding for a POTS person. Except it is also found in Sjogrens - and that's being found more and more in POTS. I have recently had a probable DX for this. My mom had it and it can be genetic. I say probable because I don't want to have a lip biopsy for a firm DX. I have a lot of symptoms. But it may be due to another issue...... Also another biggie is I have CIRS. Chronic Inflammatory Response Syndrome. This causes a lot of inflammation and can also cause too thick blood. Osmolarity (too high salt) and ADH are issues that go along with CIRS. I've always known I didn't need to use more salt. The low renin and aldosterone and higher blood pressures told me this. But having these issues makes it hard to hold onto water and this too can cause too thick blood. So again, I question, could POTS be an issue with too thick blood and inability for it to move to crucial areas like heart and brain. It could also cause blood pooling and low volume. It may not fit all POTS subset types.....but it seems to fit me. Brain fog also explained by CIRS. The inflammation in the brain has caused swelling and compression. Neuro Quant MRI testing explains this one. Issie