Psalm 23

Congratulations !! How exciting.

Hi Katie. How dreadful. I'm so sorry you experienced this. It must have been frightening. Other then Sarah's thought of possible NE spikes I can't think of another explanation. Hopefully this is a one time occurrence.

I feel bad for her as well. Pain is such a terrible thing to have to deal with. Does your daughter's doctor offer up any possible reason for the pain issues ? Of course the aching legs could be a PoTS thing because of pooling issues but right sided middle of the back pain isn't generally a PoTS complaint as far as I know.

Hi Rachel, How wonderful to hear that Tyler is improving ! What great news. Thanks for the update and for the supplement links.

Hello db2504, I wear an abdominal binder that really helps with blood pooling issues but also provides great lumbar support and I use a heating pad at times. If I am really desperate I take an advil but I try to avoid that if at all possible. Getting off my feet and laying down helps. You didn't mention where the back pain is. The binder helps with my lower back pain. If my mid to upper back is problematic I put on a lidoderm 5% patch. I apply heat as needed in that area as well. At one point I was referred to physical therapy which was helpful. It sounds as if you may need to have your daughter evaluated especially if this is a new complaint. Back pain can be indicative of a kidney infection as well as other issues. I'm sorry your daughter is struggling with this painful issue. I hope it resolves soon. Janet

Hello gjensen, Thank you for your interest and concern. I guess part of my concern over supply is the nurse in me coming through. Lol. Difficult to get past that but I'll try. I hope you're getting some answers and improvement in your condition gjensen. I know it seems like such baby steps some times but improvement is possible. Janet

You're welcome Issie. How interesting that you brought up Ketotifen even before Dr.G. became familiar with it and started prescribing it. Thanks for that. I have been reading of others experience with it on one of the mast cell forums. I hear you on the health insurance issue. I don't have very good health insurance as compared to what I used to have. I hope you get something worked out. Janet

Issie Dr. G. ordered the Ketotifen to be taken along with the Gastrocrom ( Cromolyn ). I'm taking Ketotifen 2mg bid and 300mg qid of the Cromolyn daily. Unfortunately the Ketotifen is not inexpensive. I paid $ 114 for 200 ( 1mg ) tablets and yes it still does have to be ordered with a prescription from a Canadian pharmacy. Of course after I ordered it I found a less expensive pharmacy so if I refill it I will most likely go with the other pharmacy. I imagine once on the Gastrocrom it's difficult to get off without a return of symptoms. It's certainly not convenient but I am so thankful to be able to take it. I have found it to be extremely helpful. Dr. G. had actually mentioned increasing it to 400mg qid but I think my lack of enthusiasm kept the dose at 300mg. If the turmeric is helping that's great. It's way better having success with that then taking Plaquinil and having to see an ophthalmologist yearly. I took turmeric as well as a number of other supplements for years but didn't notice a difference in my symptoms so I discontinued them in lieu of other supplements some of which may also be discontinued as I feel no different and it all gets so expensive. That's interesting about Plaquinil and the need for a particular enzyme to break it down. I guess I must have that enzyme as I never had any side effects while on Plaquinil. I'm sure that restaurant must have had something soy and gluten free. I'll see if I can attach a link with their menu. Thanks for the restaurant and eatery suggestions. I have never actually been in a Whole Foods store. I don't know why. We always end up shopping at Traders and Sprouts which are also close to Mayo. I'll have to check out your suggestions next time. Yes. Dietary considerations and food choices are huge. Janet

Hi Issie, Thank you. I will check that thread out. I'm really glad to hear that you are doing so well and your regime is working for you. Since I am not dealing with a protozoan issue low dose antibiotic therapy has never been suggested for me. I did however spend 6 years on Plaquinil for an erroneous lupus diagnosis. Interestingly though I did notice after about 6 weeks into taking the plaquinil that my rashes disappeared and my fatigue improved as did my shaky legs which has caused me to wonder lately if I would have been better off just left on it if it was helping some other kind of autoimmune issue I am dealing with. Something else to bring up in September. As you are doing though I think I would try antimalarial herbs first. I believe I do recall you mentioning a long time ago that IVIG had been offered to you as a treatment option but you had declined. I can't remember why though. I'm afraid I haven't quite gone the vegan route as yet but have adopted more of a low fat vegetarian diet. Actually Dr. G. recommended this fantastic restaurant called Greens in Tempe that now my hubby and I always end up at when we are out that way. I have never really considered colostrum as a treatment option. I guess I will have to read up on it. My Ketotifen just arrived in the mail today so that's my newest treatment to try. I hope not to have any issues with it. Have you tried Ketotifen Issie ? Thank you, Janet

Congratulations Angela !

Hello all, Well, I had a great appointment with my Hematologist yesterday. He said he'll do anything he can to help me including signing another doctors orders and overseeing the administration of IVIG however as many of you had predicted authorization will most likely be a huge obstacle. My Hematologist said working with Medicare is much more difficult then working with a private insurance company. When the IVIG suggestion was made we did not discuss what if any of my various diagnoses would allow for the administration of this therapy. After doing a bit of research I don't see where I have any so I need to discuss this further. Maybe I am missing something. The Hematologist said the Neurologist would have to come up with some pretty convincing written arguments and documentation to support its use in my case. My return appointment to Mayo won't be until September so I'm not going to think about this possible treatment option until that time. My Hematologist did bring to my attention something I had not considered. He said at times he runs into an availability issue with IVIG and has to prioritize which of his patients receive treatment. That said I would feel terrible about depleting a limited supply of a therapy that others lives hang in the balance over. I think I need to explore what other treatment options there are for targeting a non specific autoimmunity issue that may or may not be behind some of my other issues. Thank you for your interest and support. Janet

That's great. Gives this dreadful disorder more credibility. Sounds better then unspecified cardiac condition. Thanks for sharing Bigskyfam.

Hi Stephanie, Thank you so much for your response. I'm so glad the IVIG is helping you. I have seen that this therapy is approved for and seems to be successful in treating immune deficiency conditions. I guess it's impossible to know whether your PoTS itself is directly improved from it or secondarily. It sounds like your Mayo docs made a great recommendation on a successful treatment approach for you. I am thought to have an auto antibody issue which may or may not be behind my PoTS condition so a positive IVIG response would confirm autoimmune PoTS I guess. I am still a bit unclear about some things. I have more questions that need to be addressed. I am also still uncertain at this point how the authorization part will play out or how receptive my Hematologist will be to following another doctors orders. Tomorrow will be telling. I'm so sorry your son has an immune deficiency condition as well. It's so heartbreaking when our children are suffering with health problems. That's great that through your Immunologist you were able to get IVIG approved. I so hope it improves your sons condition. Thank you for your response and well wishes! Janet

Hello and welcome !!

Hi Rosey, I'm so glad you have realized such significant improvement with changing up your diet. I hear you on this one. I also subscribe to a very clean diet and have noticed how huge of a difference it makes. Thanks for sharing and encouraging others with your success. Janet

Hi Krista, Hopefully the docs you see at Duke are PoTS knowledgeable will also be able to steer you in the direction of a good mast cell doc. I think most consider Dr. Castells and Dr. Akin in Boston and Dr. Afrin who is now in MN to be up there amongst the best. I know there are others. As far as contraindicated mast cells medications go Beta Blockers are probably amongst the most potentially problematic and most commonly ordered for PoTS patients.

Hi Michele, I'm so sorry your condition has worsened. I can relate to much of what you are expressing. I have a very low sensory overload threshold. Some days it seems to be more of a problem then other days. Engaging in conversation with others either in person or over the phone can be exhausting and for me cause those feelings of over stimulation, light headedness, head pressure, jitteriness etc. I think it's a rise in catacholamines. I guess my facial expression does change during these episodes as my daughter and husband have commented on it. I laugh and say I'm having a cat fight but it's anything but funny. I basically just have to pace my interactions and set boundaries. Surprisingly over time this issue has improved. Medications and developing coping mechanisms have probably contributed to that. I always visit sitting down, I use slow deep breathing and I have learned to tune out a lot of the distractions going on around me which helps reduce the over stimulation. When I have reached my limit I just have to excuse myself and lay down somewhere quiet. I hope you find something that helps you with this issue as I know how frustrating, confusing and isolating it can be. Janet

Hi Michele, I'm so sorry you are doing poorly. My situation is like yours in that my autoimmune component is not a specific known condition ( ironically though I have twice been diagnosed with Lupus by two different Rheumatologists and then undiagnosed with it by another ) so I have wondered if authorization will be an issue. I don't yet know how it works with Medicare. I should find out more next week. I did just find out that I have to wait until my birthday month which is July to obtain a supplement plan so for me if authorization is not an issue there will be a delay in even getting treatment. I sure hope through your lawyer you are able to get IVIG approved. I'm glad to hear that the side effects are typically not too bad. It mostly just becomes a question then of whether or not it improves symptoms. I guess the other question in my mind is if the treatment helps does it become a long term therapy as I think it is mostly given for symptom management and not typically viewed as a curative. Thank you so much for your response. Please keep me posted. Good luck to you as well ! Janet

I also experience blood pooling in my legs and stomach but rather then a drop in my b/p upon standing my b/p and NE levels shoot way up to compensate as was noted on my ttt and catacholamine testing. A PoTS diagnosis is all about a rise in heart rate upon standing but it's interesting how we all differ with our b/p responses. Of course as was already noted some have an accompanying NCS diagnosis. I don't regularly take my blood pressure or heart rate unless I feel particularly off or my doc wants me to keep track of it. Janet

Hi Krista and welcome to the forum. I'm sorry you have been through so much. It's unfortunate that we have to be subjected to so many tests, misdiagnosis and such scrutiny to finally arrive at the correct diagnosis or diagnoses. With so many other co-existing conditions a Hyperpots diagnosis may very well just be the beginning especially since EDS/HM and MCAS many times go along with that diagnosis. Like you I was referred from doctor to doctor to doctor as I continued to accumulate symptoms and eventually ended up unable to work. It took me quite a while to find a doctor who was able to correctly diagnose and treat me. I am still considered a " work in progress " though. I'm so glad you now have a direction in which to move forward with. Janet

Hello and welcome to the forum !

username, Sweats/diaphoresis ( not always nocturnal ) does show up on Dr. Afrin's long list of possible mast cell activation symptoms so your night sweats could be mast cell related.

Hello Goshi, Actually Aspirin does not cause mast cell degranulation in everyone that has a mast cell disorder. If a doctor believes a patient will benefit from taking it then it is started in a very very small amount and the dosage is very gradually worked upward. I was started on 1/4 of a baby aspirin. It is noted in Dr. Afrins MCAD papers as a treatment option for some. It must be approached very carefully though as like with Beta Blockers and the potential mast cell degranulation that may result from taking that type of medication. If you had a bad reaction to aspirin then maybe you are one of many that do have a mast cell degranulation reaction to it. Another type of flu/cold medication may be a better choice for you. Janet

Hello jpjd59, Thank you so much for sharing. I really appreciate it. I'm so sorry to hear that your daughter has not realized any improvement from the IVIG treatments she has received so far. What a terrible disappointment ! For what condition is your daughter receiving the IVIG therapy ? At what intervals is the treatment given ? I'm assuming since you've continued with the treatments that your daughter has not suffered any ill effects aside from I'm sure enormous disappointment and heartache. I understand there are several different types of IVIG. Which one is your daughter receiving ? I'm sorry for all the questions. I should have asked more questions at my last Neuro appointment but didn't so I am preparing early with a question list for my next appointment. I hope your daughter sees some improvement with the remaining two treatments. Thanks again, Janet

Hello Paul and welcome to the forum !